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