Everything is Teal

So since I have surgery coming up and hadn't touched my hair in a a few months and even though it looked really awesome growing out. My stylist and the other girls there loved it, I figured lets go ahead and touch up my hair just in case my lungs get worse and we can't do it in the following months. Me and Wonder Woman (I mean who else really) decided OK its Sunday we'll dye my hair when we get home. We had went out to lunch and since there was a Target, a Barnes and Noble, and a Best buy right there we decided to stop there to so I was a bit exhausted. OK so a lot exhausted, we spent a bit of time looking for some movie with Jeremy Renner in it while I was convincing her the right movie to buy was Flash Gordon which they also didn't have. 

So we got home and set out to dye my hair. I mix it with a Wen shampoo to deep condition while its dying because i use a lot of heat and tend to tease it a bit at times. Lately its been hats and bandanas as early mornings and me do not mix at all. I still comes out this deep vibrant teal and usually protect my little area very well get everything out of the way, make room for Wonder Woman to help as the area is small. I dye the front half, she dyes the back and by the time she had come into my room, I had drop dye on my pink pants, on my floor, and dyed my flutter teal. How I did that I have NO idea!! I hadn't even touched it but it now has teal finger prints all over it. We finally got my hair and my skin a gorgeous shade of teal. And everything in that area. 

We were trying to figure the best way to rinse my hair with out me hanging over the tub, which means my mucus drains and clogs my airways, which is good it drains bad it clogs, and I usually wash it in the sink. OK well this is a stainless steal sink and i figured lets not dye the entire kitchen teal, so we figured lets stand me in the shower and rinse it that. Within the minute we turned it on, I dyed her shoes teal which were black suede i think they are OK though, the white tile floor is now teal, my PICC cover was soaked thru, we soaked the floor, and some how her white shirt stayed white!! I was just blue. It was bad!! I have pics of this I had her laughing so hard. So I was like you know what lets just let me take a shower and clean it out of my hair and wash it again and we can figure all this out next time. Theres still a spot on my arm I can not NOT get off. And oddly enough its my Pixies hair. Wonder Woman calls her my alter ego because I was tell her I want to be free and my nickname is Tinker Bell. So her gorgeous black hair is teal. The floor is teal, the bath tub is teal and my flutter is still teal!! Not like I don't have 3 or 4 floating around here somewhere but still... 

So I had Wonder Woman check my dressing as wet dressing are BAD. We were good but I think I need a new shower cover. So I somehow scrub all this blue off me, and get all cleaned up after this epic fail. I find out I can rinse my hair in the sink... 

So now that my hair is all nice and teal as is everything else. Except for her white shirt, my hair is now ready to last the next couple of months. Now alls I need is some Harley Quinn jammies small enough to fit and we are good!!

Love Y'all

Poppet

Surgery is scheduled

Today has been crazy!! Not only was my doctor running super late, i left my book at home!! I have spent a long time looking for this book and finally got my hands on it!! To leave it at home!! I had taken a decent dose of benadryl before I left to (oops) and was trying to give my poor Grandma directions while being a bit loopy. Wonder Woman wants some at the surgeon with me so Grandma gets enlisted. (Grandma is a super hero name in itself.) Then I had to explain how bad my lungs were doing today which always becomes some kind of argument... But you sound fine... you didn't even listen to them your basing it off how I am talking and its like no you don't get it leave me alone. I want my doctor so I can go home and take MORE meds so I can breathe better... No it's been one of those days. Half asleep trying to have a conversation I am sure is not making sense but some how succeeding. Sorta.

But I got my surgery date. Everyone has the day off so far but the All Father and Posion Ivey. I am hoping to see them both soon though. Last time I was in I was on so much dilauted I was texting in code even worse then "Criss" as most people call it. So he came to see me, I felt so bad they had just giving my a dose of dilauted and was seeing all these things on the wall. (I was on this for a couple days by then every 3 hours) I think he knew and understood I just felt so bad. You rearrange your schedule to come see me and I am paying attention to a laser show on the wall that you can't even see!! I know how bad this sounds... Thats OK I had the meds at home and took a pill one not and ended up pushing my cat out of bed cause I thought she was something else and immediately got up to bring her back to bed I felt so bad. And we are so off subject.

I know my Grandma is going to the hospital to sit with Wonder Woman. If you haven't figured out yet I am super close with her and this is a lot for her to take in. There a lot of risk involved but I am confident. She's finding the doctors I and Superman wants. Calling him, calling the other doctors, and she read the fine details in my chart. Superman requested Wonder Woman to be there because she has never hesitated to go over there head call Superman and get things done. Or the time she new my PA George and told him everything she wanted done and it miraculously got done. But since I have been back on Steroids lately I am of course complicating things a bit. So after I found out the date and realized how close it is to the walk I had to of course do what I do best. Harass Wonder Woman. I feel so bad for her i really do, the walk is that Saturday. We are chairs, and we got represent ourselves some how, and I am a bit nervous about the whole MCAD thing so I made her promise no matter what she has to go to the walk. There will be no excuses she has to go!! I will be in good hands. She told me she will and I really hope she is going to.

So I think everything is set but my weight. It has dropped again. Which breaks my heart because I have worked so hard to get me weight up and to what?? Lose a pound. I am really not OK with this. And I am assured "it happens." Which OK it does but where do I have weight to lose?? And it gets comical because everyone I tell reacts in there own way. Poison Ivey gets upset with me, Lady Sif finds me shakes, Wonder Woman gets mad at me for complaining, and Batman offers to fatten me up. I sit here and just laugh at the insanity, and my little group always proves to me we all have our ways of coping. And me?? I have such a will to live I will stop at nothing to find it. Even if my lungs are getting bad and these next few months will be a battle, I have things I need to do and nothing will stop me!! I also can't disappear from Starbucks for 3 weeks again either.

But I guess I best get off here make some coffee and grab some ice cream.

Love Y'all
~Poppet

Live fully!!

It's so much easier being the patient. I have been on both sides of this so I can fully say this with confidence. It's much easier being the patient then it is watching someone close to you be sick. It's heart wrenching to hear your loved one is ill, and they are gonna be ok when they look so weak and frail and you fight to believe the truth verses what the reality is that you are witnessing.

My lungs are so weak. I am short of breath on my oxygen most days and have a lot going on in other ways health wise. My lungs ache, I get exhausted so easily, and alls I want to do is function normally. But I find myself more dependent on oxygen which makes me nervous what the next few months will bring. Wonder Woman has all raised my that quality of life is so much better then quantity of life and I keep trying to explain this to people they just don't seem to get it. "Don't you want to live to be old." I do, but it is so much more then that. I want to live more then anything which is why I fight for every option that is at my hands no matter how terrifying the reality can get. I am so blessed to have such a strong team behind me, and I am so thankful for Wonder Woman who has done everything with in her power to give my a quality of life, including driving almost an hour away to get me pizza!! She has sacrificed her entire life to help me live a life I want to.

So often I hear and watch people completely take life for granted. They don't sit and enjoy what is right there in front of them. They do not pause to enjoy life. They do not like at life with wonder and amazement they look at it as something to get thru. But it's not. Life is not something to get thru. It is something to be enjoyed and celebrated, its meant to smile, love deeply, and do everything you want to do right now. It breaks my heart to see people wasting their lives away doing nothing because there is always tomorrow. Which tomorrow is never a guarantee but thats not what this is about. Life is about doing what you love no matter what. Yes I get it people have to work and such. I truly get it. But that doesn't mean you can take time for what you want to do. Make the time in your life for the people you love, the things you have a passion for, the here and now. The movie you want to see?? The person you love?? The make up you need oh so bad?? New tattoo?? A book?? I am sure you can list on your own mind is endless. But thing is so often we forget this things are what make life worth living. There is always a way to make it work you just have to find it.

There is so much I want people to realize that I have learned from this disease. And not that life is cruel to give me or you something so tragic. Yes living with this is tragic. I see what it does to the people around me but I know at least for Wonder Woman she helps and learns that life can be beautiful down to the excitement of finding a new book or trying my new creations in the kitchen. There is so much Cystic Fibrosis, MCAD, and POTS can not take from me. My soul and my desire to succeed in life. Also my desire to love with my entire heart and find a way to make life truly beautiful.

But I must leave you with this because it's one of those days where my lungs are gross and I need to style my hair!! Oh and find the right makeup looks that speaks halloween and sugar skulls/day of the dead.

Love Y'all
~Poppet

Always Something

I saw Superman yesterday, and it turns out that my minor surgery is going to be major. There is a lot going on with my lungs and my MCAD. So to be put me under is a quite dangerous. I didn't even begin to comprehend how dangerous this is going to get. I mean do realize going on a vent with my weak lungs is dangerous but it so much more in depth then that. He does not like the idea of all this and put in my chart very strict guidelines in there for everyone to pay attention to and made it clear Wonder Woman needs to be there. Seriously they are the dynamic duo.

My lungs are really bad. I get short of breath on oxygen which apparently is not good at all. My peak flows are low as it is to. I can't even lay flat on oxygen and when I was in this past month my lips were blue when I got up on an oxygen of 3. Which is why I tend to wear a lot of lipsticks of the dark shades even though they always been my favorite I rely on them now and blush. So putting me under is going to affect my lungs in a bad way. It's going to cause inflammation and such in my lungs. To the point he wants me back in 3 months to set up some testing. Which I can handle all of this. My surgeon was like oh we'll keep you for a couple days cause of your lungs. Looks more like 3 months of recovery lung wise, and unsure of how long I will be in. I always push for out as soon as possible. I have mucus in my lungs so pulmonary always pushes out for as soon as possible and since they know Wonder Woman and have worked with her for years it helps my case most times.  So thats my lungs.

Now to make this much more complicated. I have something called Mast Cell Activation disease. Mast Cells are what burst or degranulate to cause a severe allergic reaction. Throat swelling, tongue swelling and well shock. I have tons epi, benadryl, and steroids on me at all times at home. But going under the wrong can cause me to react, so theres a way it has to be done from what I gathered. It has to be done very slowly and they need to watch me closely. Superman has all the right doctors requested, and I have a very specific pulmogist at the hospital i'll be at requested to. I request him every time I go in because the last thing someone wants to do is coming in to my room and argue Superman's care plan for me. He's spent years keeping me stable, this is what works for me, they aren't touching it. There's one other doc there I will accept but I do not know his name or the PA. Though I do wish George worked at this hospital but he doesn't he was awesome in the ICU. But we don't talk about the ICU to this day.

So needless to say I got a lot going on. Which I can handle all this I truly can. All my friends will tell you I am fighter. Or Wonder Woman will tell you I am to stubborn to die. I do call her here and there and tell her I am dieing and she will always remind me of that. I am so worried about Wonder Woman though. I know how my health affects my friends and family. I see it and I don't ever mention it but I watch how everyone close to me processes my health. They all have their way of coping and there all different, but Wonder Woman has been through everything with me, from fighting for answers to sleeping by my bed. Lady Sif and the All Father have to. They were coming up to the hospital pre-picc line. It always breaks my heart trying to explain my health to people especially those I love. But there are only things I tell to people that I love. I tell everyone else I am not sure how to explain my health and my life.

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

Small update

Appendicitis has taking everything out of me, as I always nautious, in pain, and not eating like I should. Which as I always say, life goes on and I will be ok. Though all of my clothes are to big (which is a terrible thing as I had no weight on me to lose) I some how make it work. For the most part my POTS is under control. I make sure everything I eat is high in salt as I am not eating as frequently as normal, and all snack are high salt. Thinking I have things under control, the day I see Superman my lungs flare. It's here say on why they are messed up, Wonder Woman says it dust as she was stirring around the shelves, or it could be the building. But there's a mix of benadryl and steroids in me. Which is terrible because steroid use can complicate my surgery even more so then then my lungs alone.

So when I went to see my surgeon, she asked me about steroid use for lung disease, and I told her it's hard to get off of them at this point unless you give me IV antibiotics to knock all this out and help open up my airways. But here I am on steroid.. Anyways, so steroid use and Appendicitis is terrible. Apperantly it can reduce swelling while there is still an issue at hand which I am sure I have already covered that as we are 3 weeks out now and its still bothering me. Then during surgery steroids mean it might not heal properly!! The staple could leak while healing. Basically when they remove it, they staple the area, and if you are on steroids it might not heal properly and cause the bowl its connected to, to leak. Which isn't good so I am trying to stay off them desperately. And though I have started up my Doxi again its not always strong enough to keep me off steroids. It does get the job done enough though which I am normally happy with, though now I am bit worried. As if my lungs didn't complicate things as they are, there is the added worry. Yes I know for most reading this it tends to be a bit concerning. Honestly though, I am not to worried. Why?? Because one its in God's hands, and two i do have faith in my team. My surgeon is intelligent and is not taking any risk and is making sure pulmonary is there if/when I need them. She's making sure my lungs are stable before hand and is doing everything in her power to make the procedure as safe as possible.

I have always had faith things work out how they are supposed to and that things always have a reason to happen. Though at the time we have no idea why, they do. I can't imagine what this is prepare me for, or if this preparing other people for things. But one thing for sure is I am ready for my freedom back!!

But I best get off here.
Love Yall
~Poppet

All at once

It's been one thing after another lately and it doesn't seem like its going to end any time soon. I had the hospital, and 2 weeks of rest, and now its weekly appointments, until we figure things out. I am sure I mentioned in the other post I have appendicitis. Apparently it's no longer suppose to be hurting and my steroids for my lungs have complicated things. In all of this, Wonder Woman has sacrificed a lot in all of this and is continuing to sacrifice things which makes me feel horrible and guilty.

I have been sick for a month now which means most of September, which her birthday is in September, we also needed to get her a skirt for her work. The weekend we were going to look for her a skirt, I ended up in the ER, so we never got her a skirt and I think we had pushed it off earlier int he month for some reason as well. I don't remember why but I don't think it was my health. Then when I was sick I pretty much slept for 2 weeks, it's really all I did. Well sleep and eat. Doing a bit better now. But one day I was sitting there and I realized we never went to get her makeup gifts from Sephora and Bare Minerals. I had texted her saying hey we forgot to do this and she of course was all well we had other things going on... It's like yes me!! She assured me I was more important. I just always feel so guilty she was to drop her life to be with me because I am sick and in the hospital. Or I am sick and can't get out of the house because it could put me there. It breaks my heart she is constantly sacrificing herself when she deserves the world. I just want a cure to make her life easier. Wonder Woman deserves the world and I can't give it to her.

So I have been on pain killers recently and can't really do anything which sucks. I am stuck in the house all the time unless some can drive me, and I try to stay off the painkillers during the day. Which gets a bit frustrating because people are always on top of me and I just want to be free. Even more so then I usually do. Wonder Woman did get me out for a bit this weekend she took me to Target, and she offered me a scooter but uh well I declined like I always do and regretted as my lungs are so weak. But I made it and got what I needed or well I found the halloween stuff and found skull cake pans and a ton day of the dead stuff!! I only got the pans, but I hope there is still stuff there after halloween as i LOVE day of the dead and the real creepy skulls. We also got our hair done the next day which it was nice to feel human again!! Love her for making me feel human again, my bangs were down to my nose, my hair was really dirty, I was in a bit of pain so I ended slouching in the chair waiting for Wonder Woman hair to process. I was happy to be out and again feel human!!

Then yesterday was a doctor day which I am not going to get to into what's going on at the moment. I do not have all my info and dates all set yet though I do have a rough idea, I know texted some of you. Well my doctor is on the 6th floor... When we were done the elevators were broke... The doors wouldn't open all the way and wouldn't close either. So down 6 flights I went. I was huffing and puffing, my chest hurt, I was tired, and wanted to collapse but I made it. The downfall was today I am in so so so much pain. I hurt so bad. My chest hurt, my lungs hurts, and alls I am doing is clearing my lungs of the stuff that broke off and is clogging my lungs. I have been on benadryl almost all day which it's whatever at this point what am I going to do about it?? Things happen.

But I am getting off of here to get in the comfy chair!!

Love Yal
~Poppet

Support

I've been spent almost the entire month of September sick, which has taking everything out of me, including the fact that I was admitted and came out weaker then I went in. It was a very different experience but I did learn how awesome my friends are. I always had some kind of lovely message on my phone, and my parents were there with me including in isolation garb. They always have away of reminding me how much they care in there own ways. Sometimes I am reminded how caring my friends are with some of the texts I get to. Which I am sure Lady Sif handled that one but I am unsure because that entire week was a blur thanks to painkillers and benadryl...

I as well as many others who are chronically ill I am sure forget that they fight with us. They take time out of their day to encourage us, or just distract us from the intensity of our daily lives. Sometimes though, they cry with us because there is nothing else that can be done. They feel helpless and at a loss of how to make me feel better or distract me. Or some thing they are helping the best way they can and over whelm us... Though they did get me watermelon... So it evened out. But anyways.

We constantly think we are in this alone, I have even said this to my biggest supporters, "you don't get what I am going thru," "your not going thru this i am," "do you even get whats it like to feel fluid in your lungs." One said yes, and it was a bit of a relief. But this is not the reality. Just because they do not go thru your symptoms, does not mean they are not going thru this to. This something that took me awhile to learn. I am known in the hospital, I am known in the doctors offices and ERs. So you can tell I can get pretty sick, or if you read my blog you know that to. For the longest time I would tell everyone they didn't get what I go thru at all and that they are not going thru this I am. But thats not the reality.

They go thru all of this but in a very different way. They see someone they love fighting for their life and not a thing they can do about. They see the monitors, the IVs, the pharmacy of meds we take, they see all our treatment. They see us drop everything to take meds, do treatments, or connect to something. They watch us lose everything we love to do and there's nothing they can do to stop it. Even worse there's not a thing they can do to prevent all this. Some have watched this for years, many can't handle the pain and leave. I don't hold it against them, it gets very overwhelming very quick. There are people who say they are strong enough, don't get any aspect of whats going and get a very harsh reality check. Being chronically ill is emotionally draining, not just for us but for the people around us. We end up comforting them at times and telling them "hey, i am fine i got this!!" and we continue to fight and be strong for the people around us because they need just as much encouragement as we do. Sometimes I feel they need more, because they aren't going thru it physically, so they are at a loss of what they can do to help, just to give us some relief from the physical and emotional pain.

I love my little group of warriors, they are few but they are strong. They have never wavered and they always stand firm when I need them the most. Some even made deals with me going hey you can't text have Wonder Woman text me. Some clear their schedules to come see me because my text are so drug induces it's scary. Some send pictures and some send songs to distract from the reality of my surroundings. Some virtually shop with me, and some come and hold my hand. And you know what?? I wouldn't trade any of them for the world. I am pretty sure we are all crazy by this point as the things I have to tell people things that aren't the most comforting but we find a way to fight thru in the ways that we can.

I guess I just want people to know they are never alone, and though you may feel this way, remember that people around you really do care in the ways that they can express, and if you have a medical professional in your support group, they know the blunt reality of what you face in a way we can't comprehend so be easy on them, they know your reality a bit more then we do and we are living thru it.

But I best get off here don't feel so hot.
Love you
~Poppet

Why I've been MIA

So I just got a text I haven't updated in awhile and well I haven't and here's why... I've been sick again!! I thought it was just Pnemonia but I got worse as the week went on and Wonde Woman took me in to find out I had appendicitis...

I had started antibiotics at one point that week, I wasn't eating, I couldn't catch my breath and I had a fever, which to me is just Pnemonia. Something we treat all the time, I had canceled plans with a friend who wasn't to happy with me and I kept putting it off because I was just getting worse and thought all my stomach pain was a high fat diet and my lungs being gross. So come Sunday I was suppose to go see my friend on her last day of work and I tried to hard to get ready but I had this pain in my back and my lungs felt like they were gonna rip I couldn't catch my breath and I finally just laid in my chair. No coffee that day!! Then my stomach hurt so bad I was curled up in bed I couldn't move and Wonder Woman got to the point she took me in. I wasn't even texting people that day I just couldn't move it hurt so bad. So we got there, got me back did a CT scan... Got me some painkillers... The doctors comes in the room and tells me "well your health just got that much more complicated, you have appendicitis, we already got things in order to transfer you." Before I could say a thing Wonder Woman immediately asked where my Power of Attorney is because surgery with my lungs is incredibly dangerous. So they got me transferred my paramedic was so sweet, they got me in my bed, got me comfortable and the craziness starts.

So I was sent there to have a surgical work up, and one guy came in and was like do you know why your here I told yeah appendicitis and he's like oh it's much worse then that it's "perforated" and as of now we are gonna keep an eye on it, surgery once we clear the infection, and surgery in 6-8 weeks unless it burst... Lovely!! And my nurse was farely new and she was so nervous and confused then tried to run an IV with out flushing it. Ok whatever, the all the interns and residents came in, by the time the poor intern came in they had giving me more meds, I still hurt so bad, and he was doing what he was supposed and I just lost it I couldn't stop crying and the poor guy had no idea what to do but rub my back, i felt so bad for him... And by the time I made it up stairs, I was in so much pain even with all the drugs in me, that I told Wonder Woman I am never having kids if it's hurts this bad not going thru this willingly again. She knows we to well and said you don't need to with your health anyways.

So I make it up stairs and it was decent, my nurses were very sweet, I was in isolation tho. I couldn't figure it out for the longest time I was so out of it, my painkiller was making me hallucinate so I just slept. My favorite of the surgeons, well the intetn was very sweet to but never saw him again, came to see me. She was very sweet, and she got me everything I could have needed. I also never knew my lungs hurt so bad until the meds hit me... So they had pulmonary involved to because of how bad my lungs are of course. I don't remember most of these days because I was painkillers every 3 hours.

I remember barely texting my best friends, the All Father coming to see me because he was very worried because my text were nonsense at this point, and one person asking me when we were going to hang out again and well I still don't know. As I am still very sick.

But I am home for now, I know I have to have this things removed, and if that remains true I need a new tattoo... Lol

Love y'all
Poppet