New Years

Christmas has come and gone. I have a busy weekend and had no idea it was Thursday until home health called me. I am so backwards and just exhausted. Not as bad as I was, but 2 days of going non stop really takes it out of me. I am so thankful I got to see the family that loves me. Sunday I had to drive so I was very concious of what I was taking into my bed and with my low weight I am trying to up the amount I eat.

I have a lot going on health wise and most of it we can not do anything about, and the other part I am waiting to see Superman to see what we are going to do. We have a few things ruled out so its all up in the air at this point. Worse case they move my line is what we are thinking, I'm not looking forward to making people take time off to help me out a bit. I make people worry enough as it is let alone add more burden to their life. On top of that my lungs don't have a lot of give in them. I am often just exhausted and short of breath. I constantly try to keep up, but my lungs just make me so tired.

It could possibly be the amount of stuff that I have put on my body this week, it could be my poor weight that I am trying to remedy, or it could just be my lungs getting bad again. We got them stable before I am sure we can do it again. But there always so much uncertainty around my lungs.

Its once again a new year and I have no idea what this year holds. The thought of being told my lungs might get me to 32 with out needing new ones is also there. Its also  Tis the season for lung infections and with my new diagnosis of congenital IGG deficency is also playing a part in this I am sure to. I don't have the immune system to fight off being around new people, or a lot of people. Which comes with the holidays. Which I should be going back to my normal life soon with only a certain group of people round me. That should help with me not getting sick as well.

With a new year a couple days away I am going to remind myself this: Its ok to let your lungs have a say, its absolutely important for everyone to listen to their bodies. Check in with yourself and allow them to have a say in what you do, or your body in general. Be present in the moment. Be with who you love. Put your phone down and just embrace the people around you.

I try to make it a point to mediate every morning and do a small form of Yoga to let my body direct me on what we need that day. Do we need more Benadryl?? Do I need extra treatment?? Or just rest??

Whatever this new year brings you, do it with love, peace in your heart, and remind yourself that no matter what you are exactly where you need to be. Some days where we need to be is not ideal but its exactly the thing we need.

Love yall
~Poppet. 

Be present

I just looked at my calendar and its 2 days until Christmas Eve and 3 days until Christmas. I am not ready. I am not a fan of Christmas for many many reason. I can be your classic scrooge but with an attitude of how can I make peoples lives easier. I am not ready. I am exhausted, and I have a pile of presents next to me that need framed, and wrapped. I can't explain what I have here because I do not know who reads this.

So far this I got to see Santie Clause with the All Father which I love to do. Its something I look forward to. I look forward to giving people presents. I just can't deal with people who come around once a year and give me looks of pity because they have no idea what my daily life is like. They just see me once year and see how my health has progressed. Im also sitting here exhausted trying to gain an once of energy to just do something.

I broke down yesterday because we had to do an emergency ultra sound of my line. Thinking of all worse case scenarios, thinking of ruining everyones holiday, and possibly no more tattoos. I just broke. While I was at the ER I was in the room I almost died in and that didn't work out well either. My nerves were shot, my emotions were shot, and the sound of Wonder Woman voice breaking holding back tears makes me cry to this day. I think of the most trivial things and take selfies or play on my phone to destract myself from such a harsh and brutal reality. While my warriors think of worse case scenarios. Now that I am here crying for them.

So often in life we focus on something trivial to distract us from the real issues at hand. I do it all the time, I choose to live in the moment because things can be taking away so instantly. We were potentially preparing to have Christmas in the hospital to me texting the All Father right after he was done praying that I just have nerve issues in my arm. We are not sure why. Well we have are guess but the reality is we just don't know. There are so many things in our my life that we can't predict, there are so many what ifs we have in life, and we just distract our selves so we don't think.

I remind me people close to me all the time. I am ok, don't worry to much. But its easier said then done. I get it. Though a certain amount of worry is ok, which is why I say "don't worry to much," but we can't let it over whelm and break us. We can spend so much time worrying about that what ifs the we forget to be in the moment. We forget to take advantage of the here and now. We our in a season where we are so over whelmed with things that need to be done, that we forget what is important. We forget that we need to be present in a moment. We need to be with the people we love.

No this isn't just some holiday realizition. I have been saying this for a long time. Living with a terminal illness makes this very real for me daily. I can't predicts my health, or what my life has in store. But in this very moment I can say though I am exhausted I am here. I am surrounded by people who love and don't care where I am at or if I am put together. They love for who I am.

Yes I have presents that need framed and wrapped. No I havent finished shopping, but right now my body needs some TLC and today thats what I am going to do. I am going to be present, I'm going to dry my tears and rest my arm as much as I can. And I just might ask Wonder Woman for some help framing things.

I love Yall
~Poppet.

Love the life you have,

My computer is almost dead so hopefully I can get this on here before it dies...

I was recently talking to Wonder Woman and she wanted me to meet someone she knew who is in kinda a rough place. I can't go into detail about why or what is going on but when I ask her why she told me it was my mind set. I won't let my health stop me and she's not wrong. A couple things happened after that and this is what I am left.

I can not control my health or my future. I can't control how my lungs will be this afternoon, and anything can happen between now and then so embrace the moment. Embrace every single moment you have. The good. The bad. The sorrow. The triumphant's. Why?? Because we only have one life to live. We must embrace who we are and who is around us. Anything can be taking away from us at any time. For me my life has slowly been torn away from me over time, others its in an instant. Both are equally hard in their own right and sometimes we just don't understand why we were the ones chosen to live is such destress. We don't understand why we are the ones that have to make our families cry and worry every moment of the day. It can break even the strongest. And you know what?? Thats OK. Cry it out, admit your broken, and move forward.

When I was first diagnosed I was lost, confused, and scared. What does this all mean?? How will this affect the people around me?? What does this mean for my life?? My career?? And you know what I made it work. One day at a time. None of this happened over night. It happened over the process of a couple years. As my lungs get worse, I have to adjust my days, I have to adjust my meds, and how I cook. It sucks and sometimes I just sit and cry because one more thing has been taking from me. I gather myself and move on.

What I am trying to say is never ever give up. Your gonna have some days your left absolutely broken, you gonna have some days where your gonna rejoice and all of them are worth it. You may never know why this happened to you. You can still make the best of this life. Looking back on the past years theres so much I wouldn't have been able to do if I didn't have lung disease or food allergies. I got to talk to the person who ran an anaphylaxis non profit and talk about my life with MCAD and she knew CF to. I got to educate nursing students about my insane life, and teach people that life isn't easy but this is what I do. I would not be where I am today if it wasnt for my health. And you know what?? I love my life, I love where I am in my life, and all those struggles to get here. To be me. To find myself. To truly know who I am and settle for nothing less. Well that was worth it all. Could have I done all this with out my diseases?? Maybe, but maybe not in my 20s and maybe not have the love for life I currently do.

Love Y'all
~Poppet

Thanksgiving

My lungs are doing so great. I already had 2 doses of antibiotics and my peak flows are still a bit down. I can't do as much as id like some days either. I wasn't even sure I was going to be able to meet Friggas sister when she came in for Thanksgiving. There not much or anything I look forward to when its the holiday season. I have food allergies and not a lot of people are understanding. I have allergies to bringing in decorations and Christmas for me in general isn't that great. We won't get into that to much tho.

The one thing I was really looking forward to was meeting the other Ms J. I don't have a nickname for her yet. From everything I had heard about her from being a ball of energy to asking if she needed another rock for her collection... I really just wanted to meet her. I was feeling ok that weekend so the All Father came to get me and we went back over. I was asked if I wanted to go thrifting I politely declined as I am terrified of germs but they weren't gone long and I got to the meet beautiful soul that is Ms. J. When I was warned about the ball of energy I was they were not wrong and what a beautiful soul she is.

One thing that stayed with me is what love means to her. Love is accepting an offer that some has for you. Whether its a trip, a hug, a snack, or whatever it is accept it. This could be a persons way of showing love. This could be their way to say "I love you let me do something for you." The other thing is do whatever makes you happy!!

Sometimes we get stuck in these ruts of wanting to get things done and it can be emotionally taxing. We all have those things that way on our mind that is emotionally taxing. We constantly worry about that one thing until we are a ball of nerves and our just upset and we can't shake it off. We are so focused on that "to do list" that sometimes we forget to be in the moment. We are so focused one what or who wronged us, why something happened to use that we forget to be thankful for whats in front of us. We forget that things can wait so we can be present in a moment that we might not get back.

Sometimes things can wait. Not everything of course but being present in a moment and being with a soul is so much more rewarding then a perfect winged eye liner. Dropping what your doing to reply back to someone in a busy day can mean more to someone then an object. We are into a season of being thankful and having peace on earth. But why can't we have it every day??

Change in the world starts with us, and Ms. J is that change that this world needs just like the rest of the people who surround me. They go above and beyond to sometimes just hold on my hand when I am worried, or they are there to celebrate and be thankful they have a moment with me. She is the living bubble of joy and energy that I strive to be and want to be. She reminded me that I am fragile and I am deserving of love just like every one else. Though she doesn't know a lot of my background like most she's so right. Every one is we just need to embrace the love we receive and embrace where we are in life and who are journeys have molded us into.

Love Yall
~Poppet.

lungs

My lungs are a bit rough. I am sitting here in bed waiting to do treatment with really high oxygen blowing into my nose, between coughing fits and being short of breath. Saturday morning I was very symptomatic and by noon I had taking 4 grams of salt, got myself together, and went off for pizza. My lungs had no give in them and I was struggling to get to the table. Id tell you its day in the life but usually thats a sign of something deeper going on. Sunday I was coughing so bad that Wonder Woman got out of bed to check on me, I somehow made it to her tattoo appointment with a frequent cough. Come Tuesday I am coughing and wheezing and getting rounds of chest PT and calling Superman. This isn't good, probably just a seasonal infection.

I am still waiting to here back from someone between being frustrated and exhausted I asked Wonder Woman about my biggest fear. What is my lungs are failing?? It couldn't come on that fast could it?? She told me it could and with CF anything is possible. My heart broke. Every time I get in these situations with my lung infections I always fear the worse, what if my lungs are failing?? Why out of no where did my lungs take a sudden turn for the worse?? Why did I just wake up Saturday morning being overly symptomatic sitting on the floor to take a good pic of my makeup because walking get steps to my chair wasn't enough. 

This is what constantly goes thru my head when I am not feeling good. Sometimes my head is a scary place to be. I have such a love and passion for life. This disease seems like it constantly holds me back, constantly shoves me down, and just takes everything out of me. I fight for some sort of normalcy. I fight for just a simple non forced breath. I just want to be able to walk Rubes into the vet with out effort, I want to paint my face with out oxygen, I want my nervous habit to not pushing my oxygen up with my lip. But my reality isn't that. Its harsh, brutal, and just down right devastating. 

I have come to accept my life as it is. But it doesn't make living this life with these lungs easier. I am so tired of explaining to people my brutal reality. To just here "stay positive." Behind all you see and between me venting I am positive, I have a lot of hope in this world, and I have things that I truly love and people I truly love. They are more then enough reason to keep pushing and fighting. But no one sees the brutal reality I face unless they truly listen and truly know me. Im a fighter and will stand my ground, and I will cry, break down and scream. Which is ok. Whats not OK is giving up. We do not ever give up. We stand. We fight. And we will never back down. 

I was giving a hard path in life, and I'm OK with that, some people were give the path to share this life with me and they are true angels. I always call them my warriors because my life isn't for the faint of heart. And I fight with everything in me, and they fight with everything in them for me. We fight together. 

Love Yall

~Poppet 

Tis the Season, no not a Christmas blog already

Last week I had a lung infection again, right after this I found out my body has no antibodies to certain bacterias with no real answers, and I have spent most of this week short of breath or coughing.  I have been playing this game lately and I have these cute little halloween spiders that deserve so much sound effects and uhh my lungs have not always been able to produce that sound and I start coughing up a lung. So I of course needed to text Wonder Woman and her reply was "maybe another round of antibiotics" then I put up a fight and she reminded me "Tis the season." 

What does she mean by this?? Tis the season, for weather change, Christmas decorations, lots of people in and out of the house, and allergens every wear. My lung function drops in the summer because of the heat, then I get back to back infection in the fall and winter. I also get frequent allergic reactions because people eat things and not wash their hands before touching things. Yeah something that simple can trigger off a reaction. Its so easy to trigger off someones allergies and when no one is being responsible it gets hard to control things. 

A lot off this is out of my control. I can't make people listen and I also can not make people wash their hands so what do I do?? I grab everything with something over my hands and I wash my hands a LOT. I have OCD so they get washed a lot anyways and they wont treat me because of this scenario right for one. Me obsessively washing my hands kinda keep me alive as sad as it is. The other thing I do?? Call Superman. We have already done one round of antibiotics and I am trying to stay on top of my lungs at the moment because I got a few things planned tattoo wise that I need to be healthy for.

I am really not sure how to make all of this easier. I would tell you to be open and honest about your allergies. I would tell you to educate but when people do not want to listen the best thing you can do is remove yourself or take extra precautions. Some of it people will call you over paranoid for but its your life on the line their opinion is void. Wonder Woman is usually my biggest advocate and will stand by my side and fight for me. I also have the All Fathers to hide at.

I wish I had a piece of advice for you to cope with people who just do not care but I haven't figured it out yet. I am still working on this one. Me personally I just avoid the situation at this point because its not a one time thing, its over and over again. But smile, bring your own snack its OK, and don't let a grump ruining your time. Yes sometimes words hurt. Yes it sucks when people do not care about your well being. But why be around them if thats the case??

So yes, Tis The Season to fight for no allergic reactions, few lung functions, and staying out of the hospitals.

Love Yall

~Poppet 

POTS awareness

Its dysautonomia month, and I know this is something I never touch on much anymore because my POTS is typically under control and it doesn't bother me as long as I am doing what I am supposed to do, and theres isn't a major storm hitting us, but being that is awareness month I figured I'd touch on my POTS a little bit.

If you do not know what any of this is, well dysautonomia is the dysfunction of the autonomic nervous system, this is the system that controls everything you do not readily think about doing, like breathing, kidney function, heart rate, digestion and a few other things. There are many forms this, its like basically saying I have lung disease. Well what type do you have?? CF, is much different the COPD which is also an umbrella term, which is different from asthma, and so on. With POTS what basically happens is my body can not control my heart rate, my blood pressure, or my kidney function. Which leads to an interesting life because on top of this I still have cystic fibrosis.

I have a few of my EKGs on my body so instead of talking about the ins and outs of what POTS is and what is does in my body because its all in here somewhere I am going to tell you about my tattoos. Its a very common question I get, and I have a few tattoos for my POTS as well as my CF.

On my chest I have an EKG from my first MRT, which isn't the the worse EKG I ever have, probably won't ever tattoo that one on my body. When trying to diagnose this disease my heart actually stopped, we stressed my heart out to the point it stopped. I have also been in v-tach which is also deadly but that not on my body either. So yes I do have a history of dysrhymias and I have often been threatened with a pace maker. But the tattoo on my chest is still a pretty dark story. I was actually admitted for a lung infection, and any time the lungs do not work, the heart gets stressed out to. What most people over look is the rapid breathing can also lead to dehydration which was completely over looked and my heart started to crash out, I couldn't get any air into my lungs at all and they had to call an MRT. This what they call to keep you from coding out or heart stopping issues. This was right after Wonder Woman left and she had to be called back in and the All Father came as well. I was clinging to life, couldn't breathe well at all, had an allergic reaction in the ICU, and well was pretty traumatized over all this. So in order to heal a little bit over all this me and Wonder Woman got it tattooed, one is the actual EKG from the MRT it read a 56 year old having a heart attack, I did not have a heart attack but my heart and lung did take a beating that day.

The other is the one I just got with Poison Ivey, she has been a pretty big part of my life and she is the one person that is always by my side going "were getting you new lungs." Its not a well... maybe... Its a confident positive light by my side that is unwavering. She is even wears purple and red lipstick for me because she's my little fellow villain and a hero in my story. She loves tattoos so we decided to get matching ones, a moon for me, a sun for her, and a quote to go with it. It starts on me and ends on her. Im her dark friend, goth/punked out most days and my story can be quite grim and never for a moment does she let me believe that. So we found one my EKGs and my heart rate resting that night was SVT, supra ventricular tachycardia, at 2 am and me doing nothing at 156 beats a minute. Doing nothing my heart rate was that high. I also had it much higher one night in the hospital but I do not know where that EKG is at. I am sure while I was in for both of those I was having issues with my lungs as well. Since Poison Ivey is one of my biggest advocates, and does everything she can with campaigns to raise awareness for not only CF and POTs but organ donations to help not only me but people like me. We permanently put our story on ours bodies. Yes our story, because this isn't just me this is us. She does everything she can for me so I can have hope of a stable life. So I can hope for a new life, and she does everything she can to let me know I am not alone in any of this.

This is what POTS is, outside of me running and IV and not retaining any fluid, its being in the hospital with my heart beating out of my chest, and praying for relief, while Poison Ivey is there to hold my hand and help with my financial burden and as well as awareness, its your heart going crazy and beating out of your chest while people surround you working on you to keep your heart from stopping. Its being breathless and sitting on the floor to hopefully calm your heart down so you don't fall down. Its a friend in the least likely of places holding your hand saying "we got this." It Wonder Woman changing yet another dressing, its the All Father carrying a heavy purse. Theres so much more to my story then I allow the average person to see which is why I have this blog. Sometimes its sobbing on someones shoulder asking for a bit of strength when I can't stand on my own, and other days its the girl with a smile on her face where nothing can stop her.

Is this a great awareness post?? Not really I could fully educate you on what my body does and why. But my brutal reality can some times be just as good. Don't judge a smiling face and think there ok, sometimes theres a deeper story you do not see. Take the time to get to know someone and not what you think they should be.

Love Yall
~Poppet

Blood Work

I had to see a new doctor recently not sure if I introduced him yet. I don't remember what the last blog said at the moment. I am still unsure as why there gonna do yet because we are still waiting for labs. There pretty rare labs and I had a hard time getting them done.

The first place I went was right in the office area of another doctor I see. Figured why not I am here, they were so rare they sent me to the large medical facility down the street. Which I had no problems with I am very familiar with their system. All the while I am texting the All Father and sorta updating on my round about ETA. Which kept getting pushed back and I need to stop at the Ulta right there to but anyways.

So I go into get my blood work, and let them know up front as always I have a PICC (not to touch that arm as it is against their policy to work with or put a tourniquet around it) and that I am allergic to latex because some facilities still carry it. My life can complicate others lives a bit. She had a few issues getting the lab work done in general. While she was putting into the computer she kept complaining about it, I was whatever about it because I knew they sent off the lab work anyways. But I was texting the All Father as all of this was happening. I was getting a bit frustrated and there was a snack in the truck calling my name.

So she finally gets everything in to the system, and she went to grab my arm with PICC, I told her thats my PICC arm, you can not use it. That could cause me a medical emergency, she went to explain she cant use it any ways. I explained I knew and was familiar with the policy and she just cant use that arm in general because of it. She looks at me and told me she couldnt stick a needle thru my tattoo. It was against what she was taught. I kinda looked at her with this what the... expression. I have been getting blood work done for YEARS. And I have been pretty heavily tattooed for past couple. Most of the girls who work with me just go thru the tattoos.

So back to this lady, I asked her why she could not do that and if it was such an issue that she could just use the back of my hand, since it was not tattooed. Clearly needles don't bother me, and she proceeded to explain she can't do that either and that it was to many vials of blood. I looked at her again like she was crazy and said fine get me some syringes ill do it myself. I can use my own PICC line. Her reason was "its not sterile." Well neither is my room, and if its such and issue with my tattoos why not?? She went on about my tattoos so I asked her well what do you for people who have 2 solid sleeves and no skin showing. She asked what I meant by all of this, and I said your issue is my tattoos, what do you with solid tattoos and no break in the skin?? She explained we go thru the tattoos but it could contaminate the blood. I have never heard of this before at all. No one ever seems to be bothered by them. So after I asked her what the true issue was she ended up go thru the tattoo anyways.

So I finally get in touch with Wonder Woman who works for the same company and asked her what the issue was. Why on earth are my tattoos all of the sudden an issue when it comes to drawing blood. No one else has fought me on this subject. Apparently its not an issue and the tattoos should not have been an issue in the first place. I was a bit frustrated because there was an issues made about something that should not have even mattered. I cant tell you how often I have had blood work thru my tattoos.

I just wanted my blood work done so we could get it back and see what they are gonna do with me. I am still a bit unsure about all of this but thats OK. I am sure later this week or next I will have more answers and I can update you on the latest of what they are gonna do with these silly lungs of mine.

Love Yall
~Poppet 

CF

Today is Cystic Fibrosis Day or Worldwide CF day, how ever you want to word it. I found out later in the day and at that point had no idea what to do. But what popped into my mind was the necklace Wonder Woman wears every day, "Cystic Fibrosis may have her genes, but I have her heart, Mom of a warrior."

I have spent the entire day coughing, trying to get this thick mucus to clear, and even been doing some yoga poses and yet my lungs are still a bit fussy. I think every time I have messaged J in the last few weeks I have been doing treatment or getting ready to do treatment. My lungs are in the mist of a set back and theres not a thing I can do about it. I just finished my prescribed dose of steroids and I have been doing more breathing treatments then I care to. You know what though?? Thats OK. Why?? Because I got to do what I loved today. My makeup, cook, text my family, and love on the B. Whose on steroids herself!! you know how hard it is to give a cat a pill?? Did you know they are super angry and starving on them as well?? Oh and I am watching my favorite TV show.

In the middle of this set back I got to celebrate Wonder Woman on her day. Thats what matters. The fact that I am able to present with her, convince her to buy a cake, and a book (or 4). I stop to catch my breath, sort my oxygen, take my meds, and spend time with her. I am able to do what I love still, and I am still fighting with everything in me.

I will admit I get frustrated with my lungs sometimes, I leave my oxygen places I shouldn't, and sometimes space out and miss a dose here and there. Its seldom but it happens, but there is so much more that CF has taught then to be diligent with my meds and not lose 50 ft of tubing. It has taught me life is such a beautiful thing and to be present in every moment. No matter how terrible. Its to make the best of my reality and not to hold my self up to someone else standards. I know we all can be guilty of that. Its hard to break that habit but its so worth it. We all have our "extras" in life, and some hide it better then others. I hid mine for a long long time, I wouldn't allow people to know my "extras" in life because they held them against me. They were not for me and had to cut them out of my life. I can not tell you how many times people have told me to quit and give up because I have CF and looking at just my CF its kinda grim. But I am here to tell you there is so much more to me then just a disease,  and you are so much more then your "extras."

Wonder Woman sees me at my worse, and at my best. She's seen me fight to cling to life, she's seen me over come, and she's seen my conquer. She's seen me fight just to make dinner, she's seen me enjoy life in the kitchen. She's wheeled me down the hospital corridors for coffee, and she's wheeled my IV pole while I walked. She's seen everything in between, whipped my tears, rejoiced, and question my next move because its never gonna be normal. And thats my life, with CF. Its makeup, its being a Chef, its stealing her pens, getting tattooed, and just plain loving life. With a little bit extra.

Love Yall
~Poppet

Lungs

I always the worse thing that can happen to isn't my illness, its the people who don't take the time to understand. They are the ones that put me at risk and could potentially put me into a serious predicament. I saw Superman recently and I heard my lungs are not doing good, and the last ER visit I should have been admitted. The doctor didn't take the time to understand my disease, and someone Wonder Woman has questioned more then once. And its frustrating. I am trying to keep my lungs as long as possible but feeling your lungs starting to give out walking thru a store by yourself isn't fun. This potentially is fixable, and have all the confidence in the world  but I am so frustrated. Though since I didn't get admitted I go to get tattooed with Poison Ivey. She proudly wears me EKG and my hand writing, and I proudly wear her art and hand writing. I also. got to spend time with Wonder Woman at work and meet some truly amazing people. Good with the Bad. You have to look at it that way.

With my lungs and such, everything has been put on pause. My cookbook, my youtube channel, and just some every day things. I woke up pretty breathless this morning and it was a bit frustrating. I feel as though I am on everything I can be and I still have the fight. But isn't life a fight after all?? My battle is just a bit different then everyone elses.

Then I have to go in and see if I can build an immune response to things in a safe way to see about my immune deficiency. I am not sure how this is gonna end and I am almost scared to google it but I do want to keep my health under control, I want to have as much time as possible with my family and those I love, I want to stay being the pup sitter to the sweet pup that has my heart. I have so many goals that I fight for daily, and one thing to make it easier would be so lovely. I can do tough, in fact I do it daily. I refuse to let my diseases be the determining factor of what I do in life. I refuse to sit by and let CF take over. I am who I am because of my diseases but they are not me, I am not my diseases. I am so much more then that. Is it harder for me to follow my journey and my passion?? Probably I won't full out say yes, because we all have our obstacles and journeys. And I am here to yell, that it all can conquered with love and dedication.

I am also so blessed I have a family that doesn't allow me to stop because I am sick, they encourage me. They pray with me, the pray for me, and they love me so unconditionally that I don't stop to think that I can't do this. I know that I indeed can. So I have had another set back, yes we are all worried. But this to can be over come and conquered.

Deadliest Catch is on so I need to get off of here because this is the one show that I love!!

Love Yall
~Poppet 

Update

A lot has been going on. I have been non stop busy and if I am not busy I am sleeping including during the day. I don't know where to begin or where I left off so ill start at the beginning and just assume I have not post anything.

My heart is currently stable. I have 57% heart function and the damage has not progressed and though I have dysrhymias I am not in heart failure and all of it is just because I have POTS or my lungs put some added stress to my poor heart which makes it work a lot harder then what it should. I know earlier today my heart rate was steadily risen and not much could be done about that and we are still treating it as naturally as possible and that is a doctors orders and nothing I asked for. Which I am so thankful he's willing to help me stay off a lot of harsh medications.

Then my cat had an allergic reaction. I do not know what to, or how it all started, she kept trying to swallow was drooling all over the place so we took her to the kitten ER and by this time I am hysterical, poor Rubes is drooling I saw the lump under her tongue and I tried to force Benadryl down her throat, ended pulling her nail out of my skin, and we had to rush her to the closest animal ER. We get there and they wanted to biopsy it for cancer, cue the hysterics once again, and both my parents trying to console me because they know she's my baby and I'm really worried about her. We got her home and we were patiently waiting for results and it came back a really bad allergic reaction and my cat needed steroids. Oh my gosh that lil ball of floof who looks so innocent when she sleep has the cutest steroid grump face!! So maybe 3 days after we started her on all of that, I couldn't catch my breath...

We tried everything at home, and every time we got something moved and I could get air out which felt like relief id take a breath in and get it all stuck again. The secretions with CF can be super thick and stress with MCAD not a good combo. So I ended up in the ER for a couple hours and we got everything stable and got me home. Maybe 2 days later I was calling Superman because I had an infection settling down into my chest and we didn't want it to settle and cause some problems. Then since we shut down Rubes' immune system with steroids she got a Kitten cold, and now she's on antibiotics to. Yes it is OK to laugh because this only something that can happen to me.

My life is never boring. There is always something going on and suprisingly Rubes was a very good kitty for her doctor and I had to explain to people her formal name is Robopuppie. I am the farthest from normal you could ever be. But its all good because I love my life and the people in it.

Love Yall
~Poppet

Love and Light

It has been a long week!! I am not even sure how I made it thru. I have been so stressed and so frazzled I had a drink, and I was allergic to my mixer. I am totally ok I think. I am usually very in control of my emotions, this week not so much. Which not even a week a go, I got to see the ever so beautiful Frigga and she was talking to me about how choose to react to things, and how can choose to stress over things. This was not long after we re-did the kitchen because my allergies were no longer under control.

Emotions can be quite triggering for my disease, and its one thing I have to keep under control. They can trigger my allergies, they can trigger my CF to go down hill, and a whole list of things to go wrong. I normally meditate to center my emotions. Its a time where I clear my head, relax, and to just focus on myself and nothing or no one else. The phone is on silent, everything is off and its me time. This controls my blood pressure very well, it keeps it stable and keeps my heart rate stable. Also when you mediate you focus on your breathing which has taught me how to consciously notice my breathing and try to even it out in the calmest way possible. My breathing can get very rapid when my lungs are doing so hot, or my heart rate is spiked and I have to stop and do controlled breathing. This helps me a LOT. I was such a ball of nerves this Monday that Wonder Woman had to stop me and tell me to go "center my zen" so I could calm down. We had a bit of an emergency that I just did not handle well at all.

Once I finally calmed down, and even out all my emotions, I remembered what Frigga told me, people and situations do not stress me out, I stress myself out. I am in control of how I react to situation, I am in control of how I let something or someone make me feel. I choose to let people make me upset. So I tried to bring myself away from everything going on this week and I chose to look at the positive and when things get over whelming to stop and remind myself I choose to react. When someone is mean to me, rude to me, or just plain belittling its up to me to choose how I react. Its up to me to walk away and not reply back to the situation. Its up to me to stop and be thankful for whats to come. Though this is for my daily life this can be for my health to. Its just a matter of when things go wrong, and its a matter of when I need to try for lungs. I have two ways to look at this, celebrate a second chance at life, or be upset that my life has come to this. I am often caught dancing with my cat pretending I can breathe find. Why?? because that makes me happy. Because for a moment I have made a choice to enjoy a moment.

What I am trying to say is, next time you are in a situation where you want to blow up, and just yell and scream. Smile, take a deep breath, walk away, and remind yourself you do not have to react to a situation, You do not have to react to negativity. Our actions are a choice in life, and though we do not always get to choose a situation that comes into our life, we can to choose how handle it. Do everything with love and light and see your blessing start to come.

Love Yall
~Poppet 

Homeopathic

Before I start this blog, please know that all I am taking about has been cleared thru my medical team and is safe for me.

Homeopathic comes a lot with my health, it has become popular over the years and usually the first thing here*" or "are you a Christian you probably aren't because..." They are always taking back by "yes I do use homeopathic and yes I am a Christian." I also control my diet, to add to the shock even more. Now I am not saying this is everyone and I always encourage anyone to ask me any question, I love to share my story and educate people on what my life is like.

I keep my medical group pretty close, and its a pretty small group which is totally ok. I have my natural health, my spiritual health, and my physical health all wrapped up and I am so thankful some of them over lap. Being chronically ill you need a support system, you need someone to vent to, you need someone to help, and it makes it easier when everyone is on the same page and listens to my needs. My health is still slowly declining and we are in the season where ti takes a pretty hard hit. But this is the first summer I have gone into it with my homeopathic team. I am so blessed I have met Frigga and I am so blessed she has helped guide me thru all this. The first thing she helped me with is, essential oils, she found a cystic fibrosis page for people with CF, families with CF, and the medical professionals. She found all these great oils and they have really helped me out, she also got me some malabeads so I can learn to mediate.  A year so later meditation is part of my health routine, it keeps my BP normal on stressful days, and I have learned to listen to my body. We also started negative ion salt lamps to help thing my secretions or keep them thinned over night. And when we all found out I have a poor immune system we started me on more oils. Which they work!! Now a days when I have a major asthma attack, oils are a part of my regimen. I do my nebs, I take my pills, I do my PT, and I put breathe on my chest and in my diffuser. Its now a part of my nightly routine to use these oils as well. That has become a recent thing.

I use mild forms of yoga as my PICC dressing can get pulled and the All Father taught me Qi Gong, and you can commonly find me in the kitchen deep breathing and doing one move and just being a traditional hippy. I mean who else does random center moves and dance around the kitchen while they cook?? Ok that probably is a me thing. I get some stairs from people that don't get it, and thats OK. I eat food that help clear my lungs and do not eat mucus producing foods. I eat a lot of cayenne to. There are so many things that we can do to help keep my breathing as easy as possible and we all have found ways to do it, I have also been open to the help and readily ask people for help now a days.

Homepathic and western meds can work, mediation can work, diet can work, if you know how, and if you keep your mind open. The mind is such a powerful thing. Also I use all this stuff with my medications, my saline is going, my oxygen is going, Ive done all my meds, and now I am sitting here with my salt lamp because my oils need refilled and I just need to get up and do it. I know some of this is controversial to some. I have been told how people look at me when I mention some of this, even when it comes to meditation. So please be open to all this, and if your team clears it its worth giving it a try.

Love Y'all
~Poppet

Summer

I haven't been updating much lately as summer is usually the time where I lay really low, my body just can not take the heat. Earlier this week me and Wonder Woman went out the day after a major storm that woke all of us, and left me feeling very off. It didn't end well at all, I am trying to stay cautious of the heat and how poor my lungs are so I am not pushing my body hard at all. Which that often means this sorta gets left for a bit. Nothing to report, nothing going on, except sitting with my favorite pup!! My sweet boy is so smart. I was sitting on the couch with him and my tank was empty as I grabbed the wrong one. I told him I had to go and he got up and went to the chair and just stared at me. My heart broke!! Note to self: Bring a back up tank!!

I also met a friend on the 4th, and she encouraged me to put myself out there with my makeup. The poor thing, the first time she met me I had a Christmas look on which I am sure was green and red with red lipstick, and then the 4th it was red and blue. So I have taking her up on it, and started putting my extravagant makeup out there. I am also working on my cook book still and wondering how I am going about my cooking times. I don't really have a cook time for anything. All cook times very based on how you use your oven, and how you decide to bake your desert. I bake my cookies in sheets cause I am lazy which alters the time of the cookies. I guess I will just right a little thing about that?? I have found a way to get some printed and such with out going thru an editing company and doing it all on my own, which I think I am going to do. Make it a little more personal.

I am also in the works of getting some things done with Poison Ivey, she moved not to long ago so she can't come down for weekends the way she use to, so she is coming down in a month or so for a weekend and I am trying to get things sorted for all the stuff me and her our working on. Her love is working us to of course and I so can't wait to see my second family. Which also mean my job this next month or so is to stay as healthy as summer will allow me. I promised her a long time ago, she will not have to go thru life with out me, which I remind myself on hard days that I will not break my promise to her. Its the little things that keep me going, and keep me pushing forward.

But I guess I need to get off of here and cook dinner and make some salsa.

Love Yall
~Poppet

4th

Holidays of any sort are always interesting when you are chronically ill, or have food allergies for that matter. Everything can be so uncertain. Of course you do everything within your power to protect yourself and sometimes you just have to politely decline an invitation here and there.

I was sure this 4th I was doing nothing, Cook Outs can be questionable for me, I can't do fireworks and was planning to lay low until the All Father texted me to come over. Why yes of course :-D.  The special thing about the All Father and Frigga is, the always make sure I am safe even when they have a group of people over. They understand every aspect of my health, and Frigga is brilliant at finding safe foods for me to eat. I am always blessed that they find people willing to under stand my health issues and make the atmosphere safe for me.

Holidays are not always easy, in fact most times they are quite difficult. I have had people tell me to my face it doesn't matter if I come or not I can't eat what they eat anyways. I had people open things in front of me with no care and this not just a me thing its a people like me thing. Some days you just gotta be assertive and kindly explain you are so much more then your disease. Its also OK to distant yourself from these people. You do NOT have to be around people who make you constantly worry about your disease or your food allergies. Or whatever is wrong with you.

The people that alter things for you, they love you. They do not do it because they have to, they do it because they want you around and they are wiling to make an adjustment to their plans or menu so you can be with them safely. They do not want to see you sick or hurt. I know how hard it is not to feel guilty that someone make whats seems like a huge alteration to their plans. Or like the All Father, he comes and gets me for long days so I can take meds that make me tired and loopy. So Wonder Woman isn't worrying constantly, and I can enjoy the day with out the worry of being sick or getting home before meds kick in.

I have walked all my loved ones thru what needs to be done to keep me safe and cool and they are always willing to make adjustments for me, and the ones who aren't?? I had to learn to either try and be patient and teach them the seriousness of what my health brings or just distance myself from situations all together which is OK to.

Don't be afraid to cancel a plan because you are not comfortable being in a situation.

Love Y'all
~Poppet 

Summer

Its summer!! And you know what that means?? Bye Bye lung function. Though that does sound like I am "whatever" about it, I really am not. We are just use to it, the decline comes in the summer which is why we don't usually do PFTs in the summer as it makes me breathing a LOT worse. But I am so thankful for my parents that makes my life so much easier and give me that quality of life that I truly feel some days I have lost.

This past week I have all but lost my voice and I was fighting to keep an infection out of my lungs. I have started sleeping with my oils and salt lamp. We are currently doing the Theives oil to help fight whatever infection my lungs are trying not to get. On top of that I have breathe on my chest and doing several treatments a day. Yes thats right midday treatments. Flutters, vest, and manual PT as needed. I am so blessed to have my safe house away from home so when I need to get out I can just relax at another house. Or the All Father picks me up and we go for a little drive in an AC truck and we visit little places.

Life gets so complicated in the summer, its a constant fight. Its to hot in the den, someone messes with AC in the sunroom at night so when I get up I have to turn it down, which isn't an issue really, just turn it down, make coffee, and then treatment. Its sitting in front of a glass door for some sun while the AC blows on me. I don't open the door because then Rubes thinks she's brave and we can't have her outside. She actually sitting here staring me down.

Set backs now a days scare me a bit as I can't have my lung function drop to far down, because then we will have the fight of getting on transplant list a lot sooner then the predicted date. We don't want that, we want to keep these lungs as long as possible. Yes it is inconvenient toting around a tank on top of all the things I need (like meds). But this is my life, this is the life that I have fought so hard for and I am not going to stop now. We also have some major appointments coming to see what if anything we can do for my heart. We all pray, including Dr A, that we can still treat my heart as naturally as possible. This is what I will fight for as well.

My summer is spent binge watching shows, while doing treatment, or some non stressful form of exercise. Yes thats right, even with my lungs being quite vocal lately (no really you can hear my breaths some times) I am still required to do what I have to so I can breathe a bit easier.

Thought I think Rubes wants some dinner in the most passive quiet way possible, so I must keep the poor things bowl more then half full or she does the classic kitty "please fill my bowl."

Love Y'all
~Poppet

30

Not long after I turned 29 I found out we were probably going to start the transplant journey, my lung function is low, my peak flows are low, and sometimes my oxygen is high. With a lot of fighting, a lot of work, and one good luck tattoo later come January I found out we could push it off some. The amount of work and time that has gone into it is well worth it. I was able to spend this last year surrounded by people I love. I got to spend it doing the things I love. I also spent with a dedicated couple hours a few times day (my days are basically taking care of my lungs) to exercises, chest PT and breathing treatments.

Life is not clear cut, and no one knows where its going to take them. I have spent my entire 20s fighting for my life. Now I am going to spend my 30s fighting off lung transplant, and fighting for lung transplant. Funny how that works right?? My doctor predicted maybe MAYBE 3 years left with my lungs. Is quite a sobering reality. I really had to stop and center myself. What do I want out of life?? Who is in my life?? Are they going to help better myself?? Do people drain me?? What exactly do I want out of this life?? These are all thoughts you have hearing this. No one wants to hear any of this especially someone my age. But the thing is, we made it to 30, we have been working on my sleeve, and I have the best spiritual guides a girl could ask for.

Thats what the end of my 20s became, lets knock some things off my bucket list, to come to conclusion I really didn't have one. Being raised by Wonder Woman, I never had the belief that our job in life is to grow old and have family. It was to love, and do what your heart desires, so you have the quality of life while you can. That is exactly what we do. So I asked Wonder Woman for a sleeve (tattoo) and to help me meet Steven Tyler and Johnny Depp. And of course Christian Kane. So she did the only thing within her power. Help me get my sleeve. Help me embrace my Steven Tyler fashion, and encourage me to become the makeup artist I want to be when I am able.

So yes, we had worse case scenario going into this year. But we made it the best that we could. We rocked every thing we could, and we made the most of every single moment that we could. Why?? Because that is what you do in life. You don't stop and say "well there is always tomorrow." No. you ask "what can we do today to make this a reality," And thats what we do, and what I encourage you to do.

And since I have salty air lungs (thinned secretions) I am gonna do what any CFer should do. Take advantage of it and clear these lungs so I have more tomorrows.

Love Y'all
~Poppet

Tis the season of heat!! Also tis the season for me to "quarantined" because my poor body can't handle the heat. So me and Wonder Woman were trying to get things sorted in my room, and we are now on plan C, and happy to get things sorted in my room. Two people with OCD, and with strong personalities always make working together interesting. So no major computer in my room for the summer, but that truly is OK. I have books, coloring books, and the works to keep me entertained!!

When you are basically trapped indoors because your body can not handle the intense heat, you have to become creative with things to keep occupied and entertained. Yes a lot of my time is spent caring for my lungs, but those moments where you sit and our still you need something to do. I refuse to let myself be bored because then my mind wonders. I can easily get wrapped up on a bad day about how unfair my life is. I can't just go out and enjoy the beach like an average person or an amusement park. I am stuck inside with my IVs and oxygen. Yes it does seem unfair. Some days I constantly remind myself this is exactly where I need to be in life, Fun?? Not always. Fair?? Not even close. But this is my life and I have to make the best of it. Somedays its easy, somedays I am on so much Benadryl I just do not care, and other days its tough.

I am constantly reminded its going to get much worse from here. Which I get it, but if I can't cope now how will I cope then?? So I make the best of it. The last few days my chest has been a bit to tight for comfort so my free time has been spent doing relief meds, and draining the lungs as best as I can. I mediate which allows me to focus on my breathing and center myself, and I do several forms of Chest PT. In those moments of silence, its a must for me to stay busy. What do I do??

Well for one I cook. I have to eat, and I have to cook every meal so at times I dedicate a longer frame of time to focus on my one true passion in life. I love to cook and invent new things. I love to do my makeup and just in front of the mirror and design new things that can be pretty out there but still me. I love coloring and have a stack of books I spend my time with. I organize drawers when my body allows it and other times I just watch a movie and be still.

I have told the All Father several times. I do not know where my road is going to lead but I do know at this very moment of time I am where I need to be. I am on a spiritual journey that I am so blessed for him and Frigga to guide me thru, and I am in a position where I can dedicate my time to this. He has encouraged me to start an actual website and put all this out in the public. Maybe my Jon is to guide someone thru this when they our just as lost as I sometimes feel. You know how right he is??

This is my advice to you, on a day where am I just frustrated with my lungs because its not even summer yet and my lungs are already getting beat down, and I couldn't sit thru what I'd call an easy tattoo. More of a location then pain thing. It cleared these lungs a bit. However, my point. Do what you love!! So it may take you 3 days to finish a coloring page?? Thats OK. Color, Do you like video games?? Play them!! Play until your wrist hurt, I am guilty of it. If you can sit in the sun, enjoy the day, and enjoy whatever it is your heart and soul loves to do.

Me?? Well today Wonder Woman tried to get a computer in my room, it doesn't work, but my room is now organized and I have plenty of room on my desk to do eleaborate makeup. I also have gluten free pasta and fresh veggies to make a nice dinner.

If you ever need someone to just listen and understand the share frustration of life I am here, just private message and I will get back to you.

Love Yall
~Poppet

Reality

Somedays the brutal reality of my disease is very evident. I am turning 30, and I was planning some stuff with Wonder Woman but a weekend trip could not justify all the amount of stuff we had to carry. To take with just for me survive over night let alone a weekend. We of course went back to the drawing board as we alway do. Then today I was looking for an epic Steven Tyler tattoo idea because well the one band outside of KISS that has been a constant in my life is Aerosmith. One the first bands I have ever listened to, and one of my go to's when I am in a funk with this health. Treatment?? Rainy Day?? Little bit of Steven Tyler's "I Make My Own Sunshine." Always seems to brighten things up. Or Dream On to remind to fight for my dreams. Then I saw this could be the farewell tour. My heart sank. It seems trivial to most, but I do not go a day with out my music. Let own Aerosmith?? The reality that I won't be able to see him concert one last time was real, well not Aersosmith that is. And the sudden brutal reality of how sick my lungs are really hit me. To sick to do much, but still make the best of things, but to healthy for transplant list.

Which do not get me wrong, the longer I work to keep these lungs, the longer I live. Yet, some days I am heart broken by my reality?? Why?? Because I am human, I cry, I get upset, and I get frustrated. Growing up concerts were my happy place, I went with friends, I traveled with Wonder Woman, and I made so many great memories. Sometimes know I can't do this, or the risk out way the odds, its saddening. I get sad. Usually it doesn't last long because I plot the way to make things work. I usually work things out somehow.

I also want people to know, its OK to be sad about things you can't do because your chronically ill. You are allowed to be sad, you are allowed to break down, and you are allowed to be angry. You are allowed to have negative feelings about your health, about your disease, about your life. Why?? Not only our we human, but its about the come back. The drive to push you forward and fight that much harder. I tell you theres not a day I don't fight for my health, or the right to breathe. Some days I fight to "center my zen." And today or this week has been one of those moments. My life can get quite brutal with hospitals and doctors. Telling the All Father "sorry not today I had a bad night." Which the people that love you always understand. They understand your frustration and anger. They also hold your hand and say "its OK, another day we will make this work I love you." And thats what I want you to know. That another day you can make it work. Another day I can make it work. In those bad days, in those bad moments, dream. Dream big, and hold on to hope because you never know what is around the corner.

Love Y'all
~Poppet

Food Allergy Awareness

Things have been quite busy lately!! I have been getting Wonder Woman ready for pinning, which I was unable to make this year for many reason but it all boils down to my lungs. I have been spending time between my parents, and of course doctors appointments. Then Momma's Day celebrations that we can't do on the exact day. Which lead us into Food Allergy Week!!  The start of Food Allergy week I hopped in the shower and thought nothing of my poor breathing I mean it comes with showering. I looked in the mirror and hives!! No idea why but it was just hives from what I know and seemed to have been ok.

Food Allergies can make things super complicated, and on top of them I have a specific diet with my POTS, and of course my CF diet. So its a constant balance of keeping things even. I am personally very limited to what I can eat and gaining weight is almost impossible or so it seems. So to maintain a proper weight, I have to eat a lot, which some people hound me on. They don't realize its crucial I eat 5-10,000 cals a day and when you don't eat meat this can be a hard number to reach. Most of the food I eat is natural, organic, and not processed.

I don't know if you ever looked on the back of packaging for allergy warnings, but this does come into play. So that cuts out half the stuff we would think is safe, if something has been cross contaminated (my food has touched something I am allergic to) things can and have ended very badly. "May Contain" usually means the the allergen at hand is present in the food. Some people can eat this and trust that the factory does a good job cleaning. I do not see it worth the risk. I can make a pop tart, I can make a cake, I can eve make cookies. No food is ever worth the risk of your life. I had one incident almost cost me mine, and Wonder Woman had to watch it start to finish. Me cook my food in my pan I thought was safe, to eating it, reacting, and nursing and doctors working on me all at once. The only thing I remember is her crying in the corner.

This is why we take everything so seriously, it is a matter of life and death. Its also a matter of us finding a healthy balance to keep my weight stable to keep my lungs in check. All my diseases some how work together in harmony or well all going wrong at the same time. When one is trigger, the next one is triggered, and its a down hill spiral. Which is why we all work together as a team to figure out what is healthy, what is safe, and what is just off limits.

Food Allergies can seem high maintenance but when we work together as a team, we all stop to read ingredients, we all stop to make sure things our handled properly, we can all work in harmony. And rock that Teal for food allergies and the purple for CF. All cures, or preventions start with awareness. Take the time to listen, take the time to research, and after you research always ask the person how they treat their allergies and fact check whatever it is you saw on the net. Cause lets be real the internet can be quite shady sometimes.

Love Yall
~Poppet 

CF Awareness

Its Cystic Fibrosis awareness month, and after a few days in the hospital, and a visit with cardio and pulm, we found out I never had true asthma and its all just CF. So we might treat my heart at this stage we might not we just have to wait and see. Theres a lot more going into my heart then what I have posted but its all a matter of "we'll see" so I am not going to go to in depth with that now until I have more information my self. But Cardio will tell you I am tough and I know how to survive.

CF is more then just lung disease, it affects every part of my body, my pancreas, my intestines, my heart, my skin, and my cells. Every cell in my body is affected by this disease, the sodium and chloride do not shift properly and cause the thick mucus build up. I personally am not a diabetic yet, I am on the low end of that spectrum. So I am constantly watching my diet, we always have complex carbs on hand to keep my sugar at an even keel and we have a lot of salt on hand at all times.

It doesn't only affect my body, it affects my life in every single way. I was recently in cardio, and the nurse asked why are you on oxygen you are so young. I explain my lung function, and I have CF, i was born this way and so on. "But you look healthy." No its makeup but thank you. I go to Pulm, "is that right only 85??" Yes mam, i have CF its hard to gain weight. People look at my image and assume I am healthy, they don't understand the amount of work that goes into what I do. They do not see the amount of food I eat, they do not see Wonder Woman buying me oatmeal cause I am craving and buying a hi cal vegan milk to get with it to add on the calories. They don't see the All Father and Frigga buying me safe high protein snack to eat while I am with one of them as not to lose weight. Its have a full conversation with Wonder Woman thru coughing.

Theres so many meds involved when it comes to my life, and i am at the lower end of the spectrum, i take a hand full of pills a couple times a day, and I take pills every time I eat. I am constantly balancing neb treatments, with pills, with vest, with manual PT, and the exercise requirements. I am constantly finding ways to literally drain my lungs, while Wonder Woman is at work so i can loosen up my air ways. Its rubbing Breathe oil on my chest that Frigga stocks me up on so I don't feel breathless and dizzy using my flutter. Its lukewarm showers as not to irritate my lungs, and spending the next hour coughing and catching my breath. Its Wonder Woman checking on me in my sleep to make sure I am still breathing properly.

There is so much that goes into my disease, but one thing I can assure you, I am where I need to be in life. I am exactly where I am supposed to be. My health has taught how to treasure the moments I spent with my family, to love people for who they are and to look past the non sense in life. I am not CF, I am not POTS, or Food Allergies. I am a Chef, a Makeup Artist, a daughter, and a friend. I am the free spirited teal haired, wonderland obsessed girl who believes there is truly good in this world. My goal in life is to break the stigma that I am my disease and my disease defines me. I am just an average woman trying to have a successful life like most people do.

Love Y'all
~Poppet 

Asthma and a bit of drama

I recently posted on my twitter, that the worse thing that can happen to me is NOT lung and heart disease. The worse thing that can happen to me is people who do not understand my battle. Theres also people that know enough to be dangerous, their usually non medical professional that have educated on their families disease and does not understand that someone else health might be a bit different. This part did not go into my tweet though its very important to ask someone in your life "how do you treat emergency situations."

I recently have spent sometime in my pulmogist hospital because he knows how to treat my diseases and exasperations in a very specific ay, which is usually over flow of fluids, low dose IV steroids, and a few bags of IV antibiotics. We can't use epi unless we are in the hospital, and all asthma attacks even at home are treated with benadryl and steroids. We typically use liquid benadryl as it works faster and I can focus on my breathing treatments.

Since I have been out of the hospital, me and Rubes have been adjusting to a new routine as well as falling back into our old routine. So to say she has been a bit of handful its an understatement and I have been trying to work with her kitty anxiety the best I can, however she's obsessed with the bathroom. I choose my fights wisely, so i figured as long as she is not crying and howling all hours of the day just let her sleep in the bathroom, leave the poor thing alone. Well i guess she used the bathroom in the bathroom and not her litter box, and my skin is a bit sore from my heart monitor and was distracting myself so when I came to be yelled my reaction was "ok." I really had NO idea what else to say. Well this made someone flip out and they became very passive aggressive with not just the cat but with me. 8 years of the cat following me into the bathroom I can't say no now. Well this sent said person over the edge and I hear doors slam I think nothing of it.

Wonder Woman has been texted about this, and she comes home and I guess the person who's already mad at me and the kitty child tells her the bathroom door has to stay shut, i get wind of this (no one took the time to tell me before hand) and I tell Wonder Woman, this is gonna get sticky come shower time. The bathroom has no windows and is tiny so theres no room for air to circulate, this is going to trigger my asthma, how am i supposed to breathe. We didn't want to make anymore waves so, she sorta said well just hold your breath.

Everyones has had their shower already had a mild attack this point. Wonder Woman was pounding on my back so I could do my vest so nothing gets dislodged. I go to air the bathroom so I can get in there, and as soon as I open the door, I instantly had a MAJOR asthma attack. I was coughing so hard I was gagging. I used my atrovent inhaler and turned my breathe oils so I could make it down the whole to do xopenex, grabbed my benadryl, and by this point Wonder Woman is helping me because I was gasping for air. She actually had to set my neb up so I could get some relief. She got my pulmozyne and told me no vest tonight I need you to care for your lungs. She got me mored meds, and my Breathe stick, and told my kitty child to keep an eye on me.

Wonder Woman is very very protective of me, not only am I her youngest were also very close and do everything together. So lets just say she very firmly made her point and the bathroom door is open and Kitty Child is somewhere in the house.

The point?? When people try to kindly but firmly say "hey this is a bad idea" please please please listen to them. They aren't just saying this to cause a riff, they are saying this to prevent something like this from happening or worse. Yes worse, this could have ended very badly, considering by the time i get admitted I have no lung sounds what so ever (bad).

Please listen when people speak its not to cause riffs but to prevent horrid scenarios from happening.
Love Y'all
~Poppet 

update

I am sure everyone is wondering what exactly happened for me to get put in the hospital. Well what it comes down to is my lungs have had enough, they triggered off my heart, and the med i was using to "help" what was actually making everything worse. M SATs were 93 sitting on oxygen of 3 free flowing and I had very little lung sounds. Everyone gave up hearing for them.

I ended up having a lung infection for a couple months, and I saw another doctor in here so we found out i am IGG deficient so this is your immune system and what helps you battle infections. That mixed with a proper breading ground in my lungs my body just needed a little extra help. We needed IV steroids every 4 hours around the clock and some IV Axelox. On top of that we were pushing to get enough fluids in my body to counter whatever dehydration my symptoms were causing. Its a LOT of work. But I had an amazing team that works really really hard to keep me a live. And Frigga started a prayer ring for and I am forever grateful for her being in my life. I really do love her.

I have taking a huge step backwards in the battle against my lungs. Everything I worked so hard for is gone. It sounds just as frustrating as it feels, and maybe God doesn't want me to have my lung function, or he's teaching me persistence is key. I am not sure but I will find out. We also have this diagnosis to combat. What does this mean for me?? How do we fight it?? I am not sure yet I will find out soon. My immune system is temporally on the back burner because stabilizing my lungs and heart was priority. You have to be able to breathe, your heart has to be able to work so here we are.

I am still exhausted and my lungs hurt so bad from everything that has happened. I am resting and laying low in hope that I can get back to yoga and qi gong soon. Until then well we take it one day at a time and one treatment at a time. I had to step up my game in the treatment department but thats OK. Cleared lungs are good lungs. Alls I want to do is lay and sleep I am so tired from all of this but in between sleeping I am working so hard to get these lungs cleared and fight for my lung function back.

Life with a chronic illness is never ending, its constant work, and its worth it cause I am here and I am breathing.

I am gonna keep this short though as I have to make lunch, do treatment, and get to working on some things.

Love YAll
~Poppet 

Percs of hospitals

I have been fighting a lung set back since February, many many many rounds of different antibiotics, mixed with a med I was allergic to which was a rescue medication, and bacteria growing in my lungs, which triggered my POTS, and my heart to crazy. Everything I worked SO hard for, to get these lung going has been used and gone. Which sounds heart breaking but in all of this we have hope. I got to show Superman what my one med does to, apparently turning blood red is not OK. We had though this in past because my lung function drops dramatically but wasn't have much of an issue at home or so I though. Reactions don't usually phase me at all and I guess this is an issue to but if I'm breathing my OK I don't really bother with them outside of some Benadryl. Lessoned. Learned.

While I am at my third home, I am choosing to make this a positive expierance, I am choosing to find joy and happiness in a rather non glamours situation. No one wants to be admitted, but there are so perks to being in the hospital.

1. Nurses. Yes being raises by a nurse makes be biased, I am not sorry. However, if you take the time not only be nice to your nurses, you find amazing people that actually do care about getting you better and getting you home. I have met 3 people here that stood out, the one in the ER that took the time to understand my food allergies, and it turns out she has a kid like me so she "got it" on a level I needed, and apparently watched Wonderland as much as I do. As does the next nurse with the "pretty eye lashes" and sent Superman to find her with that description which is always cute how he can still find them. Turned out she's a step Mom and loves her family and is always looking for quick easy option. Which being a Chef with horrid lungs I do the same thing. The this last nurse I just had listened to my story and saw how I tied all my tattoos in to my story.

2. When I was fighting to get air in my lungs, to the point everyone gave up trying to hear the air and just get me meds, the first tattoo I saw was my Jabberwock. Which was no mistake or by chance, it reminded me I have the fight in me, I just need a little prayers and healing from God. Which all my friends started praying and its helped, big time. I am so so so thankful for my Warriors. Wonder Woman will tell you I have an army and she's right. I am human I even have my days where I have a little to much put on me and I question so much. Don't question just be.

3. I have someone to brings meds. Ok this sounds like I am being lazy, but I am known to get caught up in daily life, and forget a med or two, and go from there. Usually I have a cat meowing at me saying "mom meds." She doesn't leave me alone till I am up and following her and she knows which room has which meds I need, or she wakes me up to get some meds to. Here everything is schedule so I don't have those "oh crap" moments of wondering "did I take my meds??" "did I do subconsciously take them out of habit and forget??" Also I have a loud pump to tell me when my IV is finished. And its not "oh crap, bled my line dry."

4. Respiratory in general is great. Superman works his powers and always seems to figure out how to fix me. He's patient, listens to me and gets the updates from my personal life to see what crazy stuff I did now.  Not known for thinking much thru. I have one life to live I am going to make the best of it, and sometimes that makes me run on impulse. I always have but its harder to do now adays when you are always connected but I clearly manage. Its also nice to have those meds under control those are bit easier to remember as those meds infringe on Rubes time espically at night.

5. Humidified oxygen with out condensation build up. There is a difference between concertrator oxygen that turns room air into condensed oxygen, and liquid oxygen. My nose gets so dried out and oh gosh do I love humidified oxygen. Especially when I don't wake up to what sounds like a percolated coffee and know I have to go drain my tube and swap things over. Rubes isn't a fan of this either as it in fringes on mommy cuddles and purrs lol. She's a brat. Also the water can drop on her precious dry fur which starts a cleaning fest and evil glares for the rest of the day.

6. Will make me sound spoiled but Grandma cleans my room. As you see leading up to this I am usually sick for a bit before I get here and exhausted every option. So the coffee stains on the white desk and black makeup smears sit there for a bit before I get some clorihexadin and scrub or things aren't as OCDed as id like them to be so she really does come over and help out. We go at it at times because I don't know how to shut my mouth but at the end the day we do help each other out.

I am sure there will be more to come!!

Life does not always take you where you want it go, but it takes you where you need to be.
Love Yall
~Poppet 

Update

With a marathon of deadliest catch and how sick I am brought me back to the time I was so sick I binged the show for 24 hours strait!! I had a tunneled lined put in was super sick and i watched this show. Its become a major part of my life since then and before then to, but thought it was ironic things lined up. You see I am not doing so good, i have a strain of bacteria growing in my lungs and I am very symptomatic though I am so use to this I don't feel as bad as I should.

With a possible admit in my future and the drugs not making me feel better, i figured id update the general mass cause this is easier then a bunch of messages.

I am really sick and had a bad few nights, and with the stress of everything my body keeps going into what i call mild allergic reactions (my skin almost looks burnt), others might see this as bit more serious but for us its up the benadryl and don't miss a dose. I had so much meds in me the other night I felt like i was over medicated and it was kicking my butt. Then the side effects of the antibiotic kicked in and I was so out of it i didnt think my body could take one more med. But i ended up getting up to take that med because i was in and out of sleep every 30 mins. Its been exhausting!!

Yesterday since I was right next to Wonder Woman's work when I went to get blood work done I stopped by to say hey to everyone and the longer I was off benadryl the reactions started to settle in with the stress of what my life has to offer. I was going to stop and get Rogue One for use to watch but my body was running out of energy very quickly and I knew Wonder Woman would understand. It was also nice to stop by and see everyone as I haven't been able to make it up to the campus to talk to the students about this hectic life, and I also probably won't make it to pinning this year as my lungs need the TLC.

We are keeping a close eye on everything and I had to take a step back with my yoga, and trying to keep up with a bit of Qi Gong but thats OK, I will knock out this infection in some way and get back on the proper road. 

Love Y'all

~Poppet 

Organ Donation

It is Organ Donation Awareness month, though my team fights daily my ultimate fate is very harsh. My family makes the best of every moment with me, and they always keep safe environments as not to progress my disease.

No one's life is a guarantee, my disease's just make that very evident. The thing is though a person with no history of any disease can contract and infection and possibly face my same fate. I have time to wrap my head around it, my warrior have time with me but for some this isn't the case.

My goal in life is to break the stigma of donations, there are so many Myth's surrounding this and I am not going go into detail on this blog about it, but the main on I hear is "they don't work as hard to keep you alive." SO not true. They only mention organ donation after they tried every single way to keep your loved one alive. And for some this is when people here about donations for the first time. There dealing with grief, and wondering what to do from here. I wouldn't want to wish this situation on anyone. So my question is simple. What can I do now, to make break the stigma on organ donation. What can I say to help you understand??

I will never, try to break religious beliefs, I respect them and also ask people respect mine. There are religions that state you can't donate at all, and in some religions even blood donation is taboo and I respect it.

At this point alls I can do is tell my story and pray that people listen to me. I pray when people speak of me and my disease they stress that me and people like will one day need a life saving organ. I pray that the people listen, listen with an open heart and mind.

Though I live with a terminal illness that has destroyed my heart and lungs, I am an organ donor, in my will it says I am an organ donor, and have talked to my loved one's about this. I grew up knowing this is what you do, you save anothers life in a final act of love. Even with a disease my mind has not changed, yes my lungs are crap, my hearts a mess, but i still have other organs.

Please take the time to research this and please sign up at Donate Life or in America at the DMV.

Love Y'all
~Poppet 

What a crazy day

Edit: This was not posted the same day I wrote this and I ended up at the car place what I will call it at this point, in Jammie's!! No really target Jammie pants, sports bra, t shirt and over sized jacket and my handy oxygen!! We get there and Wonder Woman asked if I'd love to come in and it's like well why not at this point. After all I did that day, to get things squared away, made all these phone calls, text messages, and everything else. I figured why not see this to the end!!

While were waiting to hear from Superman, I found out this morning my lungs still need a bit of TLC. I just asked Wonder Woman, when people call me to tell me whats going (just wait ill explain) can i ask them for a second tire then?? My lungs are just exhausted. I was actually talking between breaths more so then normal, and trying not to cough in anyones ears.

It was maybe 6 am if that, and Wonder Woman rushed in my room asking for keys, I was kinda confused, me and Rubes were curled up and I got up took my oxygen off so I didnt have the hassle of everything and followed her to make she got my keys and such. I heard the bell on my keys by the time I got down the hall. So she takes me out side to show me her tire. FLAT. To the rim flat. I asked her what needs to be done, and she told me nothing until tomorrow she has to work, and can't take the time to call today as we all know she's a Nurse. I asked her if she wanted me to call the place we always go to, with the super nice dude that eats smores chocolate bars. She confirmed left and went off to work. Since it was so early I went  back to bed with rubes, and i had to wait for places to open. So around 730ish I got up called the place, found they don't tow, texted the All Father, and Wonder Woman. Some how got all the info I needed, got everything sorted, ate breakfast (while I was on the phone with Wonder Woman at one point), did my treatment, called texted everyone back, and now waiting for tow truck. My entire morning was taking care of her truck, trying to text her, who wasn't readily available cause work comes first, and the All Father was busy to.

My lungs are SPENT, I can feel the stuff stick to my lungs, and I have the infection already, so I am just resting them until, i need to make ANOTHER phone call. I already talked to home health to so now it really is just a wait game. Thats perfectly fine with me, my poor lungs hurt and was already trying not to talk between breaths. It's ok though. One of those days I am thankfully I am chronically ill and most of my responsibility is this. Helping my family out while caring for my lungs. Yes my first priority is what I did. IV, meds, and treatment. (I ended up having to call the car place back, and I had to talk to 2 other people at this point, and when the tow guy got there I had to talk to him, all the while why trying to talk properly and not show my lungs are kicking my butt.)

I am not one to sit idle, why I became a Chef, and my family knows I like to be free so they take me on errands ands such to get me out of the house and assure me last minute trips I don't need perfect makeup and hair (stab to the soul right?? no i am kidding). Even when I worked I use to make phone calls for Wonder Woman as she never liked to do that and I am decent with it at my best. The All Father needs someone to sit with the animals and I am there watching whatever it is, reading and just enjoying the company of animals.

You see if I wasn't sick I would not be able to do what I do. I wouldn't be able to tell a friend to come over and get her makeup done, I wouldn't be able to help my family out, and I wouldn't be able to follow my hearts passion. I always tell people I will change the world. I have NO idea how but I will do just that!!

But I am off to make yet another phone call,
Love Y'all
~Poppet

Set back or infection??

A lot my plans this weekend were altered!! Like last minute, I had made plans on Thursday for the weekend with my family and I got a call that evening that I needed to go in for a chest x-ray and sputum samples. Which turned Wonder Woman into nurse mode and my freedom to drive was temporary pulled because I cough until i am dizzy. So I am texting the All Father, Poison Ivey, and her love (i am not calling you dead pool though I am sure thats your name in my phone.) Hey probably have a lung infection or a major set back I am not allowed to drive all weekend cause I need meds that make me really tired. I can't skip a dose of benadryl or zofran at this point. They all told me hey we will come to you don't worry about it!! This is why i love my family. 

Life with any chronic illness not just mine can be completely unpredictable. It leaves you cancelling your plans, altering your plans, or working through whatever it is your disease does to you. Mine?? Means I sit down to brush my teeth some days while laying my head on the sink. Or taking a luke warm shower with the door open so I can breathe and see the people that love me. Life in general can throw a wrench in your plans, but when you battle your own body it seems like its a lot more frequent. I wish I had more advice other then "go with the flow" but thats really what we do. It's also my family working as a team to do what I need. It's Wonder Woman walking through the grocery store because I am THAT predictable and me just keeping up. It's the All Father popping over to hang with me and the kitten. It's Poison Ivey selling shirts so I can focus on OK I need to go and take care of myself and not worrying about the cost.

My lungs are currently kicking my butt and my heart rate is pretty high so I am gonna keep this one pretty short because I need to go take care of these for the second time in 2 hours. Yes this is how my entire week will be.

Love Y'all

~Poppet 

Go with the flow

Its been pretty busy around here lately and with my lungs doing whatever it is that these lungs do life happens with or with out me. Plans change at the very last minute and I have had to once again push back seeing a friend from the other side of the country.

I often feel like I have appointment after appointment, and if I am not trying to get sorted to go to one of those with reminds do i have a tank filled?? Probably not. My health makes last minute cancellations a part of my life.

Lets take yesterday for example, I was getting ready because I needed to do a few things and felt well I was out and I was at my baseline we could stop an extra place or to. Well I came out of my room makeup half done to find it was snowing!! We call that "admit" weather. So pizza was a no go, ulta was a no go, and getting gas to see my friend was a no go. It looked like a med run was my only option and Wonder Woman's way of making this better was a trip to Starbucks where people know me and prayed we can park in front of the door, and then we of course got my meds. It also worked out the stuff I needed at Ulta was at the pharmacy!! So it worked out minus yummy safe food.

This happens a LOT at my stage of lung disease but you know what, even "normal" (read healthy people) have days like this. Nothing goes right and plans needs to be canceled. Yeah I am just as shocked as y'all are. I have learned not to be disappointed that there are days I can't do what I want to and things will work themselves out for the better. Sometimes you may not know right away other times those little miracles just pop up right away and say "here I am!!"

A week ago I woke up to a text and it sounded like my friend was frazzled and she was going to make Wonder Woman's appointment work but we assured her to take the day off and we would figure it out. The day before I was wondering how I was going to make a busy week work while keeping my lungs going because something I have scheduled just aren't skippable and I am dependent on the universe to guide the way!!

Yes, sometimes cancelled plans, altered plans, or a bump in the road can get quite frustrating, it really is just a part of our daily lives. The key is stop and thank the universe for whatever it is setting us up for or protecting us from. Take 5 minutes of your day to pout it out and then revamp your day, we have learned that its just a part of this hectic life we lead.

Love Y'all
~Poppet 

Update

I had the chance to catch up with All Father so we could learn how to do Qi Gong with limited lung movement, and how to pray properly. My spiritual life is just as important as my physical life and the two combined together is quite freeing. I am so blessed I have him to help me out. Well our day turned into an adventure. Frigga's car wouldn't start which lead to us finding a safe bar to eat, which led to a trip to a dealership to find out we both go to the same cardiac office, to my second home where I found safe ramen noodles, got a bracelet made for Wonder Woman and then found another safe meal. I came home to find out my favorite show has a release date and a game that had an error in it was fixed and not only was I giving an extra day for the quest, i was giving the "hats" for that day. Things that make me smile. No really thats what I called a good day. 

Those this wasn't a cut and dry day, a lot of it was last minute I was so blessed they took the time to spend with me. To love me. To find me food that is safe to eat. I also got Wonder Woman a new bracelet. The health side of this. Lungs half worked, and I have been dealing with a constant dysthymia's by constant it can go on and off all day long. To the point I just feel so week, and that my heart feels week and mixed with poor lung function its just draining. It got to the point yesterday I called her at work. I just need the relief which we can't give me, and heat on my chest made me feel like I was just going to pass out and almost did picking the Rubes. Finally last night Wonder Woman goes you might be going in and out of A-Fib. Which has been thrown around before and she also mentioned SVT, which I have a history of and so much has been threatened and she assured me all was going to be OK and we will make to the next appointment like always we will fight and make it thru cause thats what we do. 

I can't explain those well, however a fib the atrium of the heart beating faster then the lower part and SVT is just a super fast heart rhythm which I have. With everything else wrong with my heart I was just a bit frustrated. My social life takes a pause so I can care my life. We literally pause everything that goes on in my life to spend all day doing meds, mediation, qi gong, some yoga poses, oils, and just plain out resting. All this combined together usually alleviates a lot of symptoms I have but it never actually makes me better. Its all about balancing. It like walking a tight rope, one shift in weight and everything comes tumbling down you pray you fall into a safety net of meds and not to the floor where things just go haywire. 

The thing with this disease is we don't do treatments to make it to tomorrow, we do treatments to make it to the next treatment. We try to make it to the next round of PT, to the next inhaler, to the next time I can take a pill. You put all this hard work in not to get better but to stay stable and know in the back of your mind that with everything you do your lungs are still going to fail and your heart could fail to. If you don't do your meds you dont have any sense of hope. So we fight everyday, we pray every day, and we do treatment everyday. I am so thankful I have such a support system and I am so thankful I treatment. 

Love Y'all

~Poppet 

hope

Me and Poison Ivy have been working on a few things lately and I was going thru all my photos in the last year or so specifically hospital photos or photos that are just a representation of my life with CF. I saw pain, I saw some tears here and there, but most importantly I saw hope. I saw people who have rallied around me to support me in my journey to dry my tears or bring a smile to my day. They represent my journey, each and every hug, word of encouragement and taking me out to enjoy life inspire of the nonsense I go thru.

I know my life effects people, I see the tears that are shed, the sadness in peoples eyes, and even people I never met but I am close with expressing their sorrow. Yes there is sadness in my life, I saw picks from when I was celebrating the life of a dear friend who lost her battle to lung disease, but she was such an inspiring person and she was my second mom, so of course I saw sadness there. It really is OK to be sad, but we can't let that sadness overwhelm us or conquer us.

A part of dealing with a chronic illness or a terminal illness is a grieving process. You are 100% allowed to be upset. Though there comes a point where we have to accept our lives for what they are, what can we do with what we have?? Our you gonna let your disease stop you?? Are you going to over come and fight?? Do you have a support group?? There are many questions that can go into this but my over all answer is simple, life does go on and we have to find ways to ok. We all have ways to cope and I encourage healthy ones. Life is not about what happens to you but how you react to it.

I have cried, and I have fought but I can not ever give up. I have to find hope in tomorrow. I do find hope in tomorrow. My life isn't always ideal but it is my life and I will make the best of it. I choose to collect coloring book, tattoos and makeup. I choose to cook, and I choose to find the joy in life. Its not always easy. Some times I have to sit down and explain to myself "girl you are stronger then this get it together."

What I am trying to say is wake up every day and be thankful for the small things. Today I woke up and I had a cut curled under my arm, I got up and Wonder Woman was there with coffee for me and treats for Kitten. Joy. I did treatment and took my new med that I hate but thankful I have it. Joy. Poison Ivy and her love decided to start a new campaign for me. Joy. I woke up to a text of Harley greeting the lady at doggy day care. Joy.

There is hope and there is love in this world and I encourage you to look for it, even if its a heart breaking situation, no there is joy. No there is always hope in tomorrow and if you need someone to understand and just "get it" I am always here and on tumblr under the same name.

Love Y'all
~Poppet