Move, New Kitten.

 I know its been awhile since I have been on here. I am sorry for such a long absence sometimes updating on the health is the same thing over and over again. And some of this I have kept a secret for a few months while things for falling into place.

So lets start with I am officially off oxygen for the time being. I word it this way because I can not predict CF. I am in constant contact with my team. We monitor my lung function regularly, a 10% drop is an automatic admit to my centers hospital, I also follow my diet plan and exercise. I completely changed my life style to adapt to my current issues. My lungs are damaged and so is my heart. My weight is a constant battle and I exercise daily. The only thing that has truly really changed is how I eat but I am thankful for the ability to not only for this way of eating but be able to benefit from it.

It as clean as i possibly can. I am allowed my meal replacements, my almond milk yogurt, and my tofu. Other wise I have to eat as fresh and clean as possible. I am allowed to eat nuts with in reason but its a very small amount and only because I am weird and refuse to put oil in my salad. Why?? I just dont like things on my salad. Let the veggies speak for themselves. I now live in a farm town so I am very excited for spring and what that will bring to us.

As for the rest of my life. I am currently in the process of remodeling my home. I am waiting on the flooring to come in so we can have that installed, then we can paint and get furniture. That will be a room at a time thing tho. Me and Wonder Woman are in a current debate over a black kitchen. She draws the line there but I can decorate however I choose. I got my first piece in yesterday. Its a dragon skull with a dragon sitting on it. Its sort of an offering bowl but She uses it for sweet n low. It is so beautiful. I also got the rocking chairs I had been eyeing at Cracker Barrel. Not long after we moved in they had to matching black ones. They are the current furniture so less to move for the flooring. 

Also I got a Kitten!! He's a little black bowl of fur that has no boundaries and we are constantly working on them. I refuse to let that kitten do as he pleases. My Rubes whose an adult is also keeping him in line. He's a sweet little boy that loves to sleep in Momma's lap while I game. Or just in general. He is a healthy happy boy and I am so proud of him. His name is Midnight and I embraced his love of the night already.

But my flooring is here it seems, and I need to finish clothes and prep dinner

Love Yall

~Poppet

Update

 I have been meaning to update this for a while now with a more solid answer on my life. But reality is there just is not one. My life has been one thing after another since February and very little pause and almost no progress to show for it. 

I have 2 very rare genetic markers for Cystic Fibrosis with an elevated sweat test and honestly waiting for my inheritance to pay for the PCD testing. They are curious to see if I carry a gene for that as well. I have been steadily working with my center to keep my lungs and body as healthy as possible. Its hard constant work but its well worth it. I came off my oxygen fully these past couple months. It was hard dedicated work but tho is progress forward my lungs are permanently damaged from my disease. 

I have been steadily working with a dietitian this year to. She sure has her hands full with me but I do stick to what she has me do. I am sitting here eating chicken after all. My weight got low and continued to drop the last admit I had, I have been steadily working on gaining muscle. I had to give up my afternoon coffee, garlic, onions, and pasta for now. I will eventually slowly be able to add them back in. I am also drinking the shakes with snacks she recommended as well. I refuse to get a feeding tube yet. Refuse. I want to do this on my own but I also know reality might be much much different. 

I have spent way to much time battling insurance companies. Things I need our expensive and we need reform one the insurance side of life but no idea how to go about advocating for it. I know when I speak on it at times I met with backlash but its not their health in the balance either. Its mine. Its people like me the chronically ill. 2020 taught me a lot about how people care for the chronically ill or lack there of. And please people stop sending me anti masker memes. Please. 

As for the rest of my life its a mess lol. I am still fighting for my inheritance, its slow moving but it is going. It has been drug out for many different reasons. Said person involved has been told to cut all contact with once this is done and I am so thankful my family advocates for me in that way. Its been a lot to deal with. 

Once I adjust to this new med and can get thru an afternoon with out a cat nap, I am gonna learn to quilt with my Auntie. I adore her and all she is. The blanket on my bed is made by her and it really keeps me inspired. I have been steadily cross stitching tho. A bit slower then normal but naps are a must at the moment. I have barely been on my games and if I have its a controller style PC game so I only exert so much energy but how I miss Skyrim. My bestie and most wonderful Spider Maker gave it to me many moons ago when I was sad and it still makes me laugh. 

But I guess I should hop off of here. Momma T sent me a hug in a mug tea and its soooo good.

LoveYall

~Poppet

Cystic Fibrosis

 I don't know where to start so I will start from the beginning.

I had a follow up with my Cystic Fibrosis center and I could not do my vest for a week with a new line so I thought my lung function would be off but I didn't realize HOW much it would be down. It was down 20% which is very significant with this disease. CF guidelines are 10% drop you get admitted for what is called an exasperation. Which all technical terms aside I had a nasty lung infection I did not know about because I felt fine. I called Wonder Woman, let Spider Maker know because we had gaming plans. And told them all the big big antibiotics we they were gonna start with.

Well it turns out im allergic to meropenom, yes I know lets be shocked about this. I was ok with all other antibiotics and then the next morning it started. The Resident that thinks he knows everything and lacks listening skills to under stand what's going on. I wanted my fluid which I got but they were refusing my potassium which I take a LOT. Which first morning it lead to tears. Plain out tears because I was to being heard. Then he told me that he is a doctor and he knew what POTS was and I needed to understand how the kidneys worked... This didn't end well. I told my nurse what was up and the main doc got involved and solved it. Got thru the day next morning same thing. I told the resident I need my meds and he needs to listen to me to understand. Even the doctor explained to him that some bodies just work differently and we need to listen. The resident was pulled and the group was made aware that we do not touch my meds. I am hear for my lungs. 

The other issue was my steady weight loss with out trying aka eating my weight in food and having a BMI of 17. Im not joking. I am no longer allowed to be vegan and meat just does not sit well at all. I didn't even keep it down last night. Its hard to stomach so I am gonna try something way more natural then whatever that was and lean towards more ethical forms of meat. And my weight is still dropping. Its down again so I need to order some formula, I need to get meat, I have to cut out most to all process foods, and lean towards food that does not cause inflammation.

But know I am ok!!

I have been home long so I am gonna snug the Rubes and enjoy some coffee lol

Love Y'all

~Poppet

Emotions

 Before I start this. Mr A I assure you I am ok.  Just some emotions popped up recently.

I think what people do not understand when it comes to chronic illnesses is they just sometimes break you. The thought of my line not working correctly and needing it potentially replaced just left me in a moment of tears. From the outside espically with me I look like I have all this handled. and usually I do. But certain things that you go thru just leave you with trauma. Tunneled lines are brutal. They are just plain brutal. The entire procedure then a month of pain and healing. I remember all the pain I had and I was trying to explain to J, the ins and outs of placement. The procedures to go into and such. And I just cried. 

Admittedly I have family drama making me emotional to. But there are certain things that stay with you. Yeah I am heavily tattooed and yes they hurt. But medical stuff is a different kind of pain, and then you have humans involved that aren't always nice. I remember fighting two different medical professionals with the steps, I remember the time in the ER, I remember so much and at the same time it seems like none at all because yay good meds!!

The thing is tho from the outside looking in, we tend to look strong and that we got this handled. And yes most days we probably do. A lot of this is a routine. Even Rubes knows. Nebs turned off is time for yogurt!! You get into this routine and everything is fine and dandy. Then all at once things hit you and you realize how different your life is. You talk about medical procedures in detail, you explain the constant pain your in, and it hits you. This life is down right hard. No one wants to go thru medical procedures and you tend to just take it as normal. You tell medical professionals in a serious manner if I went to the ER every time I had chest pain I'd never leave. A heart rate of 120 we don't even blink at. Coughing and clearing is normal. Waking up with pain in your lungs is normal. But at the same time it all gets to much. 

I have no issues explaining any of this to anyone, especially people in my circle and will take the time to do so. Sometimes its thru tears and sometimes its just an average conversation. I encourage people to ask me questions to comprehend my disease. But I am not brave to be living this life. I am living the only life I know how to. I think the people who understand the most tho are the ones who are chronically ill, they know that out of nowhere the emotions of being sick all the time, and having constant worries especially in this modern day world can just get to much.

Wonder Woman had covid recently. Symptom free, but the night before we found out she was close to me. So her first reaction was me. Which breaks my heart. She should have been thinking of so much more. After a hard week then of breathing issues she told me point blank, the nurses at work are right, you have CF you would show lung symptoms. Then all this catches up to you. The worries, the how different your life truly is, how fragile the balance of good health is. Not being able to get sentimental items from a house because you could just get yourself sick because of its condition. Walking away and choosing to fight for your health over and over again. Thats what its like being chronically ill. Making a choice daily no matter how badly it hurts emotionally to put your health first.

I have and will do what I can to choose my health and make sure I am able to be there for the people I love. I just got part of my family back and its means so much to me. I will continue to fight to stay healthy. I need my people as much as they need me. 

But I must go eat something.

Love Yall

~Poppet

Update

 I don't even know how long its been since I updated. Been a bit busy the past few months in a good way. But at the exact same time my life is still kinda boring as the pandemic is still going on. I have gotten into arguments with people close to me about mask!! Just wear them. Please. Fun fact in CF centers prior to this mask are required at all points for us while we are in the hospital. And we need to stay 6 ft a part as not to transfer bacteria to each other. I also had lots of testing done at my CF center. 

My lung CT scan showed a few issues. Which was to be expected. I have been having some chronic pain with them which they took very seriously. There wasn't a hesitation. I also had to do a reflux test and my chest x ray and most of the reflux study focused on how bad my lungs look. Which is also why I was not shocked to hear my lungs are a bit damaged. But I was shocked to know that my heart is a mess. I have not gotten any phone calls as of yet but there are a few issues with my right ventricle. Which is common in lung disease because it puts added stress to the heart. I know my local heart doc has warned me about this for years and it was just a matter of when it happened. But it would be tricky to treat it because I have low blood pressure and theres a debate whether or not I have asthma. One doctor says yes, one says no. Some its up in the air.

My one gene came back from testing that I am one 8 with the gene. I can't remember off the top of my head what the exact number is but its rare. Go figure. They want to some gene splicing and such. I got sent 2 genes that were similar but they state I have one (i dont even try to understand this) so they want to gene splice and find another gene they assume I have but can not find because my disease is so active. They also want to do genetic testing for primary celia dyskensias which is similar to CF but very different. Chronic mucus, damaged lungs, multiple infections, and so on. 

This entire thing started as a POTS blog, which I do have. I run my fluid daily. I deal with my POTS daily. But as for constant testing and constant work we sorta have what works for me and body down. IVs, gluten free, no meat, and easily digestible foods. I also balance this with low cardio exercises. I see all the time "do not tell me its my diet and I need to exercise" but oh darling how it has changed  my life. I eat much differently then everyone else and I am ok with it. 

I guess thats all for now. Wanted to update this quickly while I had a moment.

Love Yall

~Poppet

Venting??

Its been a long week. I am so done and I am so tired. Though I did get my almond milk yogurt today which thankful for and some good berries. I got some yesterday that were bad and wasn't even worth the trip and what I dealt with.

So early this week I went to out to get some things done. I went to Ulta get a makeup palette thats out on line but not in stores yet which I think it came out today im not sure. Tho I went to target after to get a few things, I went to back out and cart hit the side of my truck. Its brand new not even a year old and I have worked hard to take care of her. The inside is clean, the outside is getting cleaned professionally soon because im not allowed to was her myself. I thought all was good, because hit the bed of my truck and didn't realize it hit my door. So I text Wonder Woman and the All Father the nice little (about 4 inch) scratch on my door. I am beyond mad. I found out recently not many people walk to the passenger side to check for carts left behind. I also found out this week because I didn't walk to check its a legal liability and I am at fault for the "accident" when someone else hit my truck with a shopping cart. And no it wasn't mine I dont touch those nasty things lol. Wonder Woman typically pushes them for me. So I call the dealer to get it fixed and found out I had to file a claim thru my insurance. What I thought was minor is about 400 worth of damage and we need parts. Its getting fixed. Im just mad.

So after getting the estimate at the dealer to get it scheduled to be fixed, and on my way home I was going to stop at Target but I couldn't find a close parking place in general and 100 is to hot for me to walk any distance outside. So I just went to food lion and I never shop there. I got about 4 other places and its really a last resort. I just wanted to grab some berries and leave. Well im checking out and the lady behind the register comes around and starts rubbing up and down my arm looking at all my tattoos. Touching me. If I know you I have no problems with hugs and such. But someone I have never seen before in my life and just talked to for a previous minute was rubbing on me. I tenses up and kinda glared at her thru my mask and was a bit short with her after. If I know you Im totally ok with hugs. Side note I really hate this social distance thing because I miss hugs I really do. I dont know why this person had to touch my tattoos. I have actually before this never had any one physically grab me to look at my art. I get stopped all the time, I even got stopped at the dealer but from a distance. But please understand most people with tattoos if you ask nicely they will show them to you. You don't have to physically grab them to get a better look. Espically during a pandemic. My oxygen should be a clue I have a poor immune system. Not to mention I am in  a grocery store with multiple food allergies and I have no idea what you touched. I also shouldn't have to be either on blast for someone to respect a strangers boundries.

I have always said its all in how you approach me. I will explain my oxygen, my tattoos, and my health if you just ask nicely. I am all for education, and I love showing off my ink and proudly pointing at them going "thats my fave." I'll even tell you the story behind them. Except for my Rubes tattoo then you'll just get a "thats my baby." Rubes the Cat is the Queen Bee and she certainly knows it lol. Also also… is really that hard to put a shopping cart up?? Is it??

I guess I am going to get off of here and enjoy my coffee and play some video games.
Love Yall
~Poppet

Isolation life.

Its been awhile since I updated this. My life has been quite boring recently but whose hasn't?? I guess front liners to you I say thank you.

I have spent a lot of time in doors, I have done a lot of reading. Huge Stephen King fan. Tho I wanted to toss Pet Semetary across the room. Why?? Well... how dare you make me read 50 pages of a viewing, a funeral, and all the things the came with it, to be "all in his head." For that to be just a dream and the kid really was dead. I was so pissed. Yes I was emotionally involved with the book. I typically do. I also watched the movie, and was highly disappointed I didn't get the Mom's emotional dialog about how her sister died. It was well written it felt as if someone was sitting next to me telling me all of in their raw emotion. Fabulous author. The Shining is good but whatever, its sequel is fabulous. I also read Salems Lot recently to. Its marked as one of the scariest books to read but I didn't truly see it as scary but very good. Tho I have been obsessed with vampires for almost my entire life. Oh yes I was that Goth girl kinda still am. Wonder Woman calls me her vampire one because I do love them, two because I am highly sensitive to the sun and burn super easily. It also makes me very sick because I dehydrate so easily. Vampires is actually a blood infection that gives a person and very distinct look which is where this folklore came from. Oh yes, I dig deep into things.

Other then reading, and gaming of course I have spent a lot of time cross stitching. I have a Christmas present over half done and its only May, it'll be done soon I hope now that Super Adventure Box is done for the season, so I can start on the next one I have lined up. I also been doing yoga daily and thinking of getting into light weight lifting. Before my health took a huge toll I use to be a gym rat and loved weight lifting. And though I can't do what I use to do, light weights are indeed an option. I haven't bought any yet because yoga is something else I have done almost my whole life. I am not even sure how I got into it. Wonder Woman has always supported my weird obsessions so she always encouraged it. Some days I make it thru the entire work out, other days I tried which is better then nothing. Also with my Yoga I am trying to learn the balance of what I need to eat before hand, if I eat one of my salad which is a variety of fresh veggies my blood sugar tends to drop quite low, so I need the complex carbs. Tho yesterdays lunch was way to heavy but I didn't have the low sugar issues that came with it. Just to heavy for that early in the day.

Other wise all has been pretty ok, just taking isolation one day at a time, and sulking over the fact that I haven't had Starbucks in 2 months. My life hasn't really changed much other then my weekly trip to Starbucks and Target. And though I do NOT need to be drinking that much sugar, that large drink usually last all day.

But I must go and work on this cross stitch thats coming a long quite nicely.
Love Yall
~Poppet

Happy New Year

Its been awhile since I updated, I have been crazy busy getting ready for Christmas, getting Wonder Woman who works a lot ready for Christmas, dealing with my new truck, and just enjoying the holidays.

I don't even know where to start, well my old truck had or has mold in it so we had to get rid of because it just made me so so sick. In the process of that we got me a new truck and the length of wheel base was just a little bit longer then my old one so the All Father has been teaching how to drive it correctly. I was parking it today and its like ok now I need to be closer to this side and now I need to turn at the last minute, and now I need to trust the truck. I could have made it but I was a bit nervous.

Christmas was wonderful, I finally got to give the All Father his gift. I'll post it on my Poppets FB soon, but I cross stitched his cats. It was a challenge I swore up and down while doing it that I had no idea how to cross stitch at some points. It came together so well and I was so excited to give it to him. Its always fun to see him open his gifts. Other wise Christmas was pretty low key.

My health has been pretty level. My lungs are still bouncing back from the lung infection I got from the mold. There still pretty junky, and im still a bit exhausted from all of it. There not back to where they were before but thats ok. I will get them back. I really need to get back into yoga and get them sorted out properly. I saw my nurse today that told me my animia was stable so we are good there. I need some good news to end the year.

So much has gone on over the past couple of months, the death, the stuff with my bro, my health, the truck, and just trying to balance all of this. Coping with the loss of someone who was a huge part of my life, someone that made me who I am, and no one knowing I existed in their life at the same time. Traveling to my favorite location and just letting all of that go, and just being present with people that love me and matter.

The All Father texted me the week or a few days before Christmas and he told me this new year is going to be the best, we are going to make it the best, and we are going to enjoy it. We are going to make choices that lead to this as well. Cut out the negative and run with the positive. Embrace life, love life, and be thankful every day.

Love Yall
~Poppet

Long Week

So the sunroof on my truck had been leaking for awhile. I won't get into my vent session about this but it got to the point my truck was growing or is growing mold. Mold is bad for people in general but lets at CF and POTS to the mix and you got a general disaster. Two weeks ago I do believe, maybe three because we had a to wait a week to get her into the shop to get the sunroof fixed I went to Michaels. I was having some issues breathing and my face was flushed and I wrote it off as oh it was just Michaels during Christmas season, and I had texted Wonder Woman and the All Father that day. So to my horror the DMC floss I got off amazon was indeed not DMC so I went back with Wonder Woman that weekend and I was breathing fine... But why would this be a cue to listen to me. Accept the All Father, he did listen and said look this is affect your breathing theirs mold don't do the repairs get rid of it.

So we've had this truck since 2000, it became mine quite a few years ago an it was my main truck to drive. We got her brand new off the lot and its only ever been ours so I did also want to keep her because she's held a very strong place in my heart. Take her into get fixed, the guy who did my sunroof told us their is indeed mold in the truck (my breathing should have been the first clue but not venting). So of course I call Wonder Woman, start looking for places to clear the mold and such while trying to game with Spider Maker (thank you for being so patient with me). At this point I am just frustrated and ready to cry. She finally text me to get advice from the All Father which I could predict that convo, we were looking at hundred of dollars worth of repairs not taking into consideration my CF and how this is affecting my breathing. Im sure you see where this is going. Yep we had to get rid of our pride and joy.

The guy I was test driving out new girl with was listening to all of this. It reminded him to check his sunroof and clean it out because this is a very very common thing to happen with sunroofs. The tracks that drain the water get clogged up. I took mine over to the all father and we found out then the sunroof didn't even open.

My lungs are doing okish, I'm generally just exhausted and had to cancel many appointments over this but thats ok I can reschedule them all.

Love Yall
~Poppet

Sorry I didn’t update yesterday, maybe it’s been 2 days?? I’ve been busy and tired!! High elevation, and walking up hills!! It’s been a lot on me but I’ve been doing ok at the same time because the air is so so clean.

Two days ago, we toured the battlefields!! I was thinking about the war side who was where, and who was doing what. I love the movie Gettysburg and we were placing locations and wondering where someone’s ashes were spread. I was struggling walking up hills but not letting it stop me. I couldn’t imagine walking up a hill like that, starved, and people firing at me. It’s horrific and heart breaking. Us Virginians wanted to find out where our monument was at and what was over there. It took us forever but we did find it. And a few other statues as well it was the first time I had been back that way!! There’s a pic floating around of me at Devils Den to.

Yesterday, we did to museums they were so so cool and I’d never seen either of them before. We got to see the civilian side of the word and gave us a side we never thought about. The 7,000 thousand dead bodies after the war in a hot summer day plus the animals?? And all that laid wounded. They had to indure all that for months. The house we were at were taking over by confederates who ransacked the place in a sense and it was turned into a hospital. We also went to another museum that sorta showed the hospital side of that. Someone really should not let me walk up 4 flights of stairs again an exhausting day, we did some shops and found some haunted grave yards. Yes I am that girl lol!! Loved haunted things and history but we always come in love and light.

Today, oh gosh today. Mr A check out my insta the train is on there (lilcriss3) we got to rise on a old steam engine!! Ok so this wasn’t thought out, open car, smoke ran steam engine, and the cold. I was bit congested and wheezie from all the smoke, it wasn’t bad going up but coming back down it was awful tho i am very much so ok, sitting off my oxygen even and the view was gorgeous!! We made it a place called Hanover Junction and it so far has been the only place I could eat safely with out me cooking it. It was Italian ice and it was so so good!! Such a gorgeous train to.

But I’m going to hop off here,
Love Y’all
~Poppet

Fun

Apparently last nights blog just posted, I didn’t realize that. I’m once again on my phone so this shouldn’t be long either, sorry for the short version of this stuff at the moment been a mix between busy and tired. I have learned that my lungs do not do hills!! Does that stop me?? Well no not really I have been and do where my oxygen. Today we went to see the panorama and listened to the history of the civil war. In general not just this area, my area was on there to. I learned a lot of stuff and took some pics. I have some posted on insta.

So for those who don’t know me, I love history all kinda of history but specifically haunted history. Yes how shocking the little goth girl loves haunted stuff. I have found haunted stuff every where!! It’s just so wonderful I also found (on display in a museum) historic clever and chef stuff from the civil war. You typical see the medical side which now a days seems barbaric but they didn’t have what we have today. Seeing how truly tiny the uniforms were amazed me!! We also walked the cemetery and such which is so so serene and peaceful. I also found a cook book about the culinary history of the war.

We basically just walked around today to find stuff and just look. It poored this morning, and we have been cooking or own meals and such. Which I’m more then ok with it’s safer and better for my body really. Tho I did notice they don’t have anything gluten free, I’m “intolerant” to it in a sense tho they do have food allergy stuff here. I can’t wait to walk battlefields. This is one of my favorite places to be. Tho. I’m exhausted and do need to get meds and stuff done.

Love Y’all
~Poppet

Travel

So I’m on my phone and this won’t be to long until I get my computer on and running. Traveling with CF and POTs is a lot and we packed an entire truck with medical supplies. I wish I was kidding but it was full of medical supplies and I’ve been sitting on the floor playing cards. You can follow my stuff in Instagram at lilcriss3 or maybe FB but def insta lol I’m heading off for the night tho

Love y’all
~Poppet 

funeral

Yesterday was the funeral, it was with estranged family, that had no idea that I was on oxygen or had an IV in my chest. Not that it should matter but some were visibly taking a back by my appearance. Some of the family new that I have always been the goth girl and I didn't "grow out of it" tho I picked out the nicest clothes I had for 90 degree weather, tho part of my sleeve was showing, but you know I got thru most of this ok. I learned catholic funerals are beautiful. I learned that my long lost aunts husbands remember m fascination with black squirrels. Ok no they really exist go google them. I love them!! There jet black. I had been talk to that aunt on FB the last two days and thanked her for being there for said person while he passed and I was glad he was at peace because I know how painful lung disease and infections can be.

I was ok until a point and I'm not sure how much I want to say on this. But the person that died put me and my family thru hell. HELL. I didn't want anything to do with him. I sorta knew some of this health stuff was going on a year ago when a nurse reached out to my me thru Grandma. I had texted the All Father who told me, make sure your making a decision you can life with not one based off emotions. This is solid life advice. Take a step back and make a decision not based off emotions. A lot of this stuff that was said thru the nurse was so hard to hear and so hard to believe because they weren't seeing the other side of it. And my visible sobbing didn't stop the comments and conversation. I also saw an uncle that told me he would make sure me and my brother were taking care of, I asked him kindly please just take care of my brother do not worry about me and if he needed any help from me and Wonder Woman we are phone call away and we will do what he can to help us. If you know me personally I am sure you can guess who died.

I was promptly removed from the situation and my family that went with me came over and helped me sort some of my emotions. And we all will come together to support my brother and what he needs. I was also texting the All Father and he said this to me. If you experience a flux of emotion use them as a learning experience to grow in light, everything we experience makes us better.

Love Y'all
~Poppet

Emotions

This is just gonna be an emotional jumble session, this is no way health related. I was sitting in bed earlier nose in my book that Ive almost knocked out in a week and my Grandma comes in and tells me someone wanted to talk to me and it was up to me what to say, on a whim I said ok. She didn't recognize my voice but I knew hers. I worked well volunteered at the hospital with her years back. I wasn't even 16. She told me Kens dead. I still won't give to much info about him. Whether its to protect me or him I don't know. He's my brothers dad though and our history was hell. I knew he was sick and my family as you know from last blog made a choice to say no on my behalf and never said other wise out of choice. She was pooring her heart out to me as I just sobbed on the phone. My lungs still hurt and my eyes burn with tears. And it hurt so bad to hear how much he said he loved me. When the last thing I ever heard was how much he never wanted me because I have been sick me entire life.

All of the emotions and all the hell I have been thru with him is still so raw all these years later, I cry for myself out of loss and all these memories. The worry for my brother, the split decision to go to a funeral with estranged family that barely know and not even sure what they think of me. I really hope the said nurse I was talking to earlier is going to be there because I know she'll support me. I have her reaching out to family for me.

I guess I need to get off of here tho and try to sleep take some Benadryl even to keep the puffiness in my face down?? I don't know.

Love yall
~POppet 

Life

Yesterday I was faced with the realization that some in my family that I haven't seen in years is dying. Well he's in the ICU with pneumonia and cancer, he's refusing a vent, and all family has been called. So this is sorta more my brothers family then mine but at the end of the day I will make my self available for him. Heres where all this gets sticky and I have no idea why I am put this on my blog tho few of you know who I really am. But here we go.

So this person has made my life hell until I got away from him and just found its OK to cut ties with people who do not belong in your life. He tore me down at every chance and just always told me I was just to sick to be in their life. Which this way before my lungs were even at the state they are now. One of his friends called my Grandma and asked if I wanted to come see said person, and she and Wonder Woman both quickly declined on my behalf and then told me about this. Which I mean they weren't wrong to do so. I texted the All Father then and yesterday as well and he always encourages me to make the right decision whatever I feel in my soul is right. Not what my emotions are telling me to do. I did end up declining and yesterday to. Its such a strange awful situation but its something I feel in my heart is right.

I had already made plans to game with Spider Maker which sorta got some tears yesterday, because my heart breaks for my brother. He also knows more in-depth into all this cause Im leaving a lot of details out of this and assures me I need to do what's right for me. You see emotions have an effect on your health. You have to do what is right for yo, you have to do what's best for your soul. I think the best advice I have been giving on this is to close yours eyes, put your hands over your heart, take a deep breath and the first thought its how you feel. Ok so this may go hand in hand with my meditation practice but its helped me a lot over the years.

I forgave this person a long time ago, I didn't want to carry that hurt and sadness with me. Life can hand you a lot of things but its how we grow from that. We can let our past and people hardening us or we can forgive and let go. Forgiveness is such a powerful thing. You don't need to contact them or let them know but its so important that you find forgiveness in your heart.

Life is hard, its short, its wonderful, its amazing, and its beautiful. Find what moves your soul and allows peace and happiness to be present

Love Y'all
~Poppet

Small update

I haven't updated this in awhile, more so because nothing really has been going on. I have been trying to knock out a bunch of cross stitch so I can just enjoy the week with Wonder Woman. I have one the last thing to order for halloween but I think all is set for that day. Yellow blush from NYX in matte and shimmer it'll complete the look. I got the hardest cross stitch done tho, it was one stitch here and there for hours on end. I can't post them yet as the All Father might read this and he does have access to social media but I am so proud of how that came out. Id love to make a living off doing cross stitch cause I do enjoy it. The All Father loves hand made gifts too.

Other then that I have been gaming with my friend a bit, I got a text early this week that the game we had been talking about was super on sale and that it was in my steam inbox. Oh my gosh. This game is HARD Three hours and three classes later I got thru the boss, but we have been co-oping the game to help me because its a tough game to get thru. Like one hit bosses and the only strategy that exist is dodging. Thats it.

As for my health, its been OKish. I had a small lung infection recently after a week of rain and then we got hit by a hurricane. It sorta skirted around us but it still had an effect on my lungs. I could barely breathe and eat at the same time but we all expected that to happen. My lung typically do not handle weather like that at all. This week its a full moon which has an effect on my POTS so its good I've been gaming this week, I did yoga yesterday and struggled thru it. But other wise I've been doing ok.Yes its ok is you struggle thru things you typically don't. Its ok if some days its hard to get thru simple task what matters is that you do it. It doesn't matter how long it takes it, the end result is what matters. The feeling of accomplishment is wonderful. I would love a good work out but even the smalls ones matter.

But I must get off here and finish breathing treatment and chest pt. Gotta keep theses lungs clear and the mucus thin.

Love Yall
~Poppet

update

Its been awhile since I have been on here. I had PFTs which I do believe showed my lungs are stable but proves I physically can not take a deep breath in, and I also had CF clinic. So I have been busy and super tired. Now the heat of the summer has hit its peak and needless to say I can not breathe. I've had to momentarly had to pause part of my life. I don't mean that to be sarcastic but the only things I can do is cross stitch, read, games, and the such and that in between laying down to rest. But someone asked an incredibly good question about the heat.Why does it affect me and why don't meds work to help it. Well they do but if it only was that simple.

So I do meds every day, a few times a day, all year around. So yes when we go somewhere all that stuff has to come with me.  IVs, neb, stuff for chest pt, medications, and anything else I could possibly need to get thru a day or night somewhere. But the heat mixed with humidity makes the air really thick. You hear people with out lung disease complain about this. Now imagine having lung disease on top of all that. Then I get dehydrated extremely easily. Which that causes my secretions to become almost like cement. And though I stay in a cool area of the house, I do not exercise, and do what ever I can to stay cool the outside elements still effect me. I also have 2 diseases that depletes the salt in my body so Im constantly taking salt in. The simple answer is yes dehydration. Medication does help but only so much.

Outside of being busy and trying to keep up with everything nothing much has really been going on. I am waiting to be approved for genetic testing so we can see if I can extend my life. No no its not a miracle cure but added years is something we all strive for. CF is a terrible harsh disease and though we can not stop the process of destruction essentially we can slow it down. Which what we all want. The funny thing about life is no matter what we do to alter things, life is still going to happen the way it is supposed to. We can't control or predict things. We can simply embrace and accept life for what it is. I personally love life and the amazing things it has brought me. But I'm going to hop off of here and take advantage of the little time I have before the heat takes over.

Love yall
~Poppet

Dear CF

So often you hear all the sad and heart breaking things that come with you. You here how you taking children way to soon and parents raise kids knowing all to well the fate you have laid upon us. Your usually the sadness in peoples eyes, and the apologies you here soon after. But what they don't see is how much you have taught us. 

You have taught me and those around me to be present in a moment. Put the phone down and truly pay attention to those around you. Listen to them like truly listen to them. Hear what they have to say, technology can wait, social media does not need to updated, some texts can wait and phone calls can be returned. 

How to love unconditionally setting no standards of what people should live up to. You know sometimes "your best" is simply breathing at times and we all have bad days, every last one of us. We never know what someone else is going thru. So often we expect people to drop what they are doing and demand us to be fully there when our souls need rest and thats truly ok.

It has taught to truly accept who I am and who people around me are. There is so many things about you I can not change. The coughing, the pills, the meds, and it truly has taught me to look inside and accept my life for what it is. We can not change certain aspect of our lives. There are things about us that simply just the way we are and we need to embrace it. Be who you are meant to be and not what society wants you to be. 

You have taught me to be thankful for every single and for the people around who choose to love me. I have been so blessed to have so an amazing interesting life. You can be difficult, challenging and down right heart breaking but thank you for teaching me who I really am.

Love

~Poppet

Memorial Day

Its been a busy week for the most part, I went to a cook out on Monday and though I never eat at them because of my food allergies, I did enjoy myself. They all offered to go inside for me and my lungs but it was by a river or really a channel of sorts, I opted for the shade of a tree to breath in the fresh air and any salt in that water would help loosen my lungs. I got to spend it with family and though they are always nice and always offer safe foods the All Father goes by the motto "you didn't bring you don't eat it." Theres a lot of risk in eating foods you do not prepare for yourself even though they are versed in food allergies cause of their daughter.

We were sitting their talking and I used to baby sit their daughter when we were both much younger, they had family get togethers and I use to baby sit her. Oh I still lover her she's such an amazing person and very talented artist. I dont remember how old she was but she was young young and I use to love well still love the Rocky Horror Picture show and that's what really got me into makeup and when I put it in she would sit still the entire movie and just watch it. Yes yes I know not a very good influence but we both still love it to this day.

While we were at the house, they got out this game called corn hole, and I'm not sure fully of the rules and point system but after watching them play for a bit me and the All Father decided lets play around. I had no idea it was a physically demanding game but we did really good for the first time playing we were only a couple points behind and I got to catch up with one of the neices (his not min). I just love spending time there. I was exhausted and I got bit my mosquitos but it was so worth it. I got a text that night from the All Father making sure I didn't go into some weird reaction from bites even though I had huge welts from them. I was fine, and just now feel rested after a long week. But it was so worth it. I truly enjoy spending time with that part of my family.

I have another busy day in front of me, I need to wash makeup brushes and my hair, get some yoga in, and get things sorted for this weekend.

I love y'all
~Poppet 

Bit Long

Sorry I have been MIA on here, life has been busy but quiet all at the same time. Wonder Woman works a LOT and I mean a lot so I tend to run errand and stuff for her. Which actually meant a trip to Ulta... OK for those of you who don't know what Ulta is its a makeup store. I spend way to much money there. I actually bought me a Game of Thrones pallet. Oh oh and not long before that I had ordered the entire Avengers collection. OH MY GOSH. My heart. My heart is broken from that movie.

We finally got to see it (I promise no spoilers Mr. A) the weekend before someone called out and she has to go in. So we didn't get to see it and she was so upset, I dont even remember what occupied me that week. I was giving a bit of for warning to cope with the movie but I assure coping is not even close. I sobbed my heart out. I also found out I had contact allergic reaction to milk that day. I highly recommend you go see this anyone that loves Marvel. On top of it being mothers day it was nurses week. So I got her a purple rose badge holder, some earrings from my Pixie Momma from across the pond, and CF mom cup. Its CF awareness week.

Oh speaking of CF, did y'all know it affects your digestive system?? Spider Maker is use to this by now, sometimes I tend to make me large meals, or high fat meals. If I dont take enough enzymes or forget to take them by body can not actually digest the food properly if at all. Yeah, he's the one that gets those text "to much fat" and he knows. Its incredibly painful. Like not move lay in bed painful. I have learned many many ways around this just out of share stubbornness. Air fryer and I sometimes add water to my pan fry just so I'm not eating so much fat. This week I messed up somewhere and one of those bouts.

I also finished his dragon I was working on and got it out to him for birthday. We had a new release on the game we play together so I got a random call from him the other day. We play guild wars 2 and a few other games together, though that's are main one and we are raising a dragon on there. We as in the entire community that has chosen to do this. What I love about this community is that they all come together and help each other out. They are so kind except in PVP. I have this one kid that I helped once and he knows about the whole CF thing and he gets on there every now and then. He tells me all the CF stuff he has seen on TV (movies/news/tv) and he always ask permission to ask me questions. Its the most amazing thing I ever seen someone do. This kid (he's a teen I think) he was one of the few that asked what did you decide to do when it comes to that point. Most people just assume there's no other choice, but he just knew and I was kinda impressed with that.

I also started working on a gift for the All Father so that has been keeping my busy to, but as for my health its been pretty stable actually. Nothing to alarming came up outside the hives I got from using a tissue that touched milk. And I got to pop by to see the All Father recently to.

But I must get off of here and get this stuff rinsed out my hair.
Love Y'all
~Poppet