Christmas

I should be sleeping I am sure, but I figured I take the time in the quiet with Rubes by my feet to update the blog. Its been a long crazy week and a whirl wind of things going on.

I have been busy all week if it hasn't been one thing its another, I had appointments and I had shopping, and I needed food, and then I just need a rest day, and more appointments. You get it and then I got a call from the All Father what I was doing this morning the exact same time I had an appointment and I ended up at Mass tonight and I loved it. It's always lovely to be surrounded by people have joy and love in their heart. The All Father and Ms. J (who will from here on out be called Frita) got me a salt thing to help clear my lungs, and some essential oils to help with my lungs to. We were getting to the point we needed something to work or I need an emergency  appointment but we got things worked out and I got to  catch up with some friends.

I am loving the salt!! The oils are amazing to and I have a connection to get them and it just helps break down/open up my mucus/lungs. It also smells so incredibly good now I need to try the digestive stuff to. I also signed up for Cystic Life, to help surround myself by people who understand what I go thru and its not just for CFers.

Christmas isn't always the best for me, their is a lot of stuff that goes wrong for me and this month is just an example of how much I do not like Christmas but it has turned out to be a fun Christmas and I am so bless to be surrounded by amazing people.

I must hop of here,
Love Y'all
~Poppet 

Weekend

This will probably be my last post until the new year. I share a computer with someone and I broke my wireless iPad keyboard and my Macbook needs upgrades cause its really really old. I mean it's like 10 years old and runs wonderfully. Wonder Woman has taking it to work this semester and had to explain by the decorations it is indeed my Macbook and not hers. And thankfully my nursing family knows me very well because I have spent countless hours there with her so they just new lol. I am her creative nut. My creativity leans more toward dark and metal then most people. If not FOOD. But anyways I guess I'll give you a quick update of where we stand going into Christmas and the new year.

Though I have made it clear no one will talk to me about these lungs of mine until after the New Year because my medical team has decided to let me have the holidays. I know I mentioned in the last blog that I told Wonder Woman and the All Father we have to make this the best Christmas ever. So we are striving for that.

Since we couldn't go Christmas shopping two weeks ago, me and Wonder Woman went this past weekend which probably wasn't the smartest idea ever but we survived. We went out towards one of the malls and hit a LOT of traffic. So we decided uh no lets go hit up the Field and Stream store and go into the other shopping center the back way. Wonder Woman has been pushing me to pick something out for Christmas other then a tattoo or two... Well lets be real tattoos. So I was like whatever we need to go shopping anyways and I need things at Ulta and I was getting to crisis mode on the benadryl levels we keep around the house. One bottle if not enough for this time of year.

So while I was in the boot section she was shopping for clothes and trying to keep an eye on me at the same time. I finally helped her pick out a few shirts and a really cute sweater!! If you don't know I love plaid. I have quite a few shirts in their that I wear when it comes to plaid but my close keep getting to big. Their was this table of plaid shirts sitting by her sweater area and this lite teal caught my eye and I told her it was almost Alice blue and she assured me it was indeed Kane style. Even the smallest size was to big so she's like you can wear it as a jacket like you do anyways. Whatever I gave in and I almost got it early. (I had this gigantic bag of her clothes and mine we bot in my chair and i brought them to her to ask which I am giving her now and for Christmas because she had a Christmas party she had to go to and she offered but I gave back cause she insisted i needed something for under the tree.)

So we finally go to the other place I think it was Bed Bath and Beyond which was a HUGE mistake. As soon as you walk in the for its culinary heaven and Wonder Woman was trying to get me OUT of that section. They had all 3 of my favorite brands to but the quality of knives were horrible!! And she got me past all the Harley Quinn stuff to finally find what we were looking for. Which I would NOT touch and someone thought I was crazy. I am sure SO many people have touched that pillow I was NOT touching it.

Once we got out there we finally stocked me up on benadryl and we never made it to Ulta which we need to finally get to sometime this week. I think Wonder Woman wants to get me a makeup palette or brushes. Because I have stocked her up this year. She knows what she's getting, so I have I think 2 shirts back their, a book, a little cube with pics on it, no 4 shirts and sweater maybe something else in there.

But i guess I need to get off of here.
Love Y'all
~Poppet 

Small Update

This has been an awful week, as we hit Wednesday I got a phone call from my nurse to call her back. I call her and she told Superman wanted me to make an appointment because my lung function was inconclusive due to the fact that I can not get enough air in and out of my lungs. When she first said that I had no idea it was to make an appointment with Superman I figured OK lets try again. No, its discuss options. After the end of January I have NO idea where I am going to be or what we are even going to do. The only other time I had him call me for an appointment is before I went to Texas because I had just gotten out of the hospital. That was a HUGE trip but I have already texted the Sif and told her its time for a trip to Asgard even. No she doesn't live in Asgard.

I have actually not told anyone this outside of Wonder Woman and the All Father and I think Sif. A lot of you will find out here, and I am sorry but there is only so much I can handle in a week and I have finally found my breaking point. Thankfully God has made me a pretty tough girl and I just bend in the wind and bounce back swinging. I told both of them though when I texted them we have got to make this the best Christmas ever. I am not sure how long I am going to be in my area and I am so sure the All Father and Ms. J (I really need to rename her Frida) will come to see me so it's not an issue. Its just a LOT to take in around the holidays. I do not have a good track record with the holidays anyways but I don't want to ruin everyone else's either. I want my Warriors to be happy. I want them to enjoy the holidays and I want to celebrate such a wonderful life and wonderful people who have consistently helped me find peace and love with the insanity I go thru.

I am trying to find away to cope with this, I am also still trying to exercise my lungs even though they are infected AGAIN, I know I am going to be OK I am tough girl and I know how to handle my own. But please pray for my Warriors they have to cope with this to and I assure its much easier to be the patient saying "Hey I am OK," then it is for someone to believe it.

Love Y'all

~Poppet

Tis the Season...

Everyone in the house being sick has finally caught up with me. As much as I have tried to avoid this I am once again sick. I was doing treatment last night and half way thru pulmozyne I felt like I had someone sitting on my chest and it took me a few minutes to get things feeling a bit OK. Wonder Woman was as always guiding me thru what I needed to be done. She then told me "I do not need to tell you what do, you know what to do, and when you don't i'll tell you to do it." It twisted my mind all around. I should have seen this coming because when I was out Friday I had to stop to take meds because I was so dizzy from all the issue going on in my lungs. And once my lungs affect my heart my POTS is triggered off.

My family is also starting to bake and they use "real" ingredients even though mine taste normal and all you have to do is say please and i'll be in the kitchen baking. Any form of activity helps out. So it'll be Tis the Season to avoid my allergens. I am so crazy about washing my hands its obsessive. Wonder Woman usually just rolls her eyes at me and lets me carry on with it. It gets to the point I can be overly paranoid, which people assure me, that it's a self embedded safety issue so I don't trigger something. I also still need to get things for Christmas for my family and though I know what they want its just a matter of getting and wrapping it. Wonder Woman also was trying to figure out what to get me outside of finishing my tattoo, and I told her that was enough and she insisted I needed something under the tree. I insisted I did not and Bah Humbug!! Yeah that so went over well as she mentioned the words "Ulta" and "What have you seen there that you need supervision for not to buy." It's like uhhh... Johnny Depp. Not. Finished. lol I also need to find a place for the March Hare!! He throws salt at Alice in the kitchen when she mentions it needs more salt and its such a Chef thing to do!!

Other than this, not much has really been going on health wise. Its just a matter of finding the right balance with my lungs, which is getting to prove hard. I have the best team I could ever ask for on my side. Clearly Wonder Woman has me trained to know what to do, even when I do not want to. Why she called to stop the tattoo because my lungs were quite bothersome. Or well, I kept getting dizzy cause a plug kept getting lodged in an airway.

I am also working endlessly to stay healthy enough to not need to lungs, I have so much to live for. When I tell people every day counts its because you do not know how precious a day is until you face a disease like mine. Or any terminal illness. I am OK with my fate, I have accepted it a long time but, I also have a LOT of fight left in me and I know I need to make the best of every moment count. I have no idea where I will be in the next few months, but no one really ever does. So its up to us as people to make the best of our lives.

Wonder Woman just called me and I have 10 mins left before I have to go take some meds to help open up my lungs a bit.

Love Y'all
~Poppet

Perspective

There is a quote that floats around "Your allowed to break down, you are allowed to cry, but you are never allowed to give up." I was just talking to my Grandma and she was listing everything that has happened thru out the year, and she eneded with a friend of hers going thru major stuff (back to the whole not my life keep it private thing) and my lungs are not doing so hot. It's all about perspective, I am known for living in Wonderland and finding the good in any bad situation. Yes my aunt broke her knee, destroyed her car in a major storm, and we had a few issues with Grandma's vehicle, and our water heater broke. This does sound like a terrible year I will not deny that but lets find the good in the bad.

My aunt had an awesome to that pushed her to get movement back in her knee, even when she didn't want to move it, she also had the entire summer off and she tried TRIED to relate to me with oxygen, even though 24 hours doesn't equal 3 years of dried cracked bleeding noses, she gave it an effort and she also got a decently new car out of the disaster she had with her (the 2 are unrelated) and we were blessed enough to get Grandma's care fixed. The water heater will get fixed and my lungs well its inevitable i have CF, but I have a fabulous care team and we have OPTIONS. How fabulous is it that we are able to reach out to people. Not everyone has the blessing.

I admit myself there are times, I break down and go why me?? I learned not to say this to doctors because some go "omg emotions lets medicate her!!" Its HUMAN to have emotions. Even me the one who can be emotionally detached at times. I know how to shut myself down and preserve my poor little body from a terrible reaction. It's human to feel sadness, to cry, to be upset with your situation. I have been there myself. When things happen with my lungs that are OUT of my control I stop and have a mini pity party. Who doesn't?? But after your mini breakdown take the time to go OK, is this fixable?? If it is lets fix it. Most of us are not in this alone. The people you love are here to help you thru life.

I told my friend recently. I do need new lungs in the near future. She sent me a video to remind me to never give up!! A week or less before I opened up to Wonder Woman, that when I tell people that they have pity for me and I do not want that at all. She gently reassured me the people who love you will not pity you and feel sorry for you they will back you up and be there for you. She is SO right, thats exactly what the people I love do. They back me up and let me be sick when my body needs and is always the encouragement in the background.

The reason behind this is not "theres always someone worse then you." No no no thats not are attitude at all. We all have are personal battles and what is terrible for some, is not so terrible for someone else. Its all about perspective. It's about finding the good in every situation. It's something everyone can learn, yes my lungs are questionable, but we have options. My aunt's knee broke but she was able to get it fixed. There positive in everything you just got to take the time to find it.

But I must get off here for bit,
Love Y'all
~Poppet 

Thanksgiving

It has been such a buys but lovely weekend and I am so blessed to be surrounded by the people who love me.

With PFTs coming it has been a reminder to spend time with people I love because I know this could end in a very devastating way. I know if my PFTs are low this is gonna be the start of figuring out where to go for new lungs. Though we have a place chosen does not mean thats where we are going to go. It's also an emotional battle of "what is this doing to my family" and "we got this."

Choosing to get lungs when the time comes is a personal choice that I alone can make. No one can make this choice for me because I ultimately have to live with it. I have such a fight in me to survive this life and to get a chance to live that I do want that choice. I am not scared of the alternative because I accepted my fate a long time ago. I am at peace with where this life will take me, but that doesn't mean I don't want a second chance at life.

I love my family more then words will ever explain, I have said before I can't handle what my life does to them. Someone took the time to tell me this is my life, and I have to accept my journey in life and make this choice based on me and me alone. Though it sounds so selfish its so so so true. This is my journey and my destiny. I truly love life and there are so many reasons in life to live. Not just my family but things I  truly love to do.

Life is truly beautiful. When we take the time to experience life and not just get thru it we see such beauty in life. My reality is this:

My lungs can only handle so much so things have to give. There is no long days for me with out a break in the middle. Small short days, and a good 2 hours to get ready so my lungs can do their thing. I have to cancel plans at the last minute because my lungs can't lung. I can't catch my breath. I cough myself delirious and I do wonder what kind of life is this?? It's mine. This is my life. It makes me so much more thankful and grateful for when I am able to go out. I am in the moment and I put my phone down to be with the people I love and the people I am getting to know. We are so consumed with technology, with phones, the internet that we forget to be in the moment. "What is I miss a text or a phone call." Its OK. The stranger sitting next to you because a fabulous person and  you are missing out on making a difference in their day. They will remember you took the time to be in the moment instead of on your phone. Starbucks is my best example. Mine is fabulous and I love them the people that work their. I love talking to them and spending time with them. I also got to talk to an art major once!! Fabulous person.

The point of all this. Living with a disease that has constantly made me sacrifice me life, I have learned be in the moment. I have learned to make time for those I love, yes somedays it does mean making a choice one or the other. You will never get Time back, it is so important to be with loved one's, spend time with loved ones, and take time to be with people even you do not know them. Love!! Love deeply, find a positive in every situation, and always always always be kind to people. Life is to short to be mad and angry. Its OK to choose you, and at times be selfish. Its OK to put others first and be selfless. Most importantly just love. Choose love. Choose hope. Choose kindness.

Love Y'all
~Poppet 

Lungs

A lot has come to light recently. Between giving up social media, I got on long enough to give the lung update and off again. And my health status I have found out who my team of warriors really are. Theres a lot of true about there are people who care and people who just want to know.

I have been working to keep my peak flows stable. Not get them up but to keep them stable. We hope to buy us some time to do some testing and get me on a med I can't even afford. No one can, there is a cost on my life when it comes to CF. But it's not one that will stop me. I decided a long long time ago what my decisions will be. I will fight.

I have been trying to tell people before Wonder Woman made my health public what has been going on. I still have a few to tell that do not follow social media, but its so heart breaking to watch people tear up when I tell them that the next stage my battle will begin. Though most do not what all this entails, some do. It sucks so much to watch people cry because of something going on with your life. And I know its not me thats making them cry, its my lungs and I really have to separate the to. But I don't want to make people cry. I also reassure them I am in good hands and it'll all be OK. A few have checked up on me and my family but some have not made the effort to make sure me or my family is ok. And no I do not expect people to message me after seeing this to see if I am ok. I am good, I have taking the time to cope and make and effort to spend time with those who love me.

I honestly do not think people realize what this does to my parents or my family in general. There is so much stress that has been put on Wonder Woman alone, and then the All Father. They have to not only cope with my reality, but moving... Then other thoughts I just don't even want to think about. The stress of everything to come is going to be over whelming and heart breaking and I get it. Gosh do I get it.

I always tell Wonder Woman, that I have this and my PFTs are going to be stables but the reality is I am calling her after I was my hair because I am choking on my lungs and I and dizzy. She stays on the phone just long enough for me to be OK then send me on my way. A year ago that would be cause for concern now its my reality. What I would have been admitted for 2 years is now my daily life.

This morning alone I woke up with white lips and it was whatever just another day in the life, until I took off my oxygen to wash my face and I had to catch my breath before I washed my hair to start what I just mentioned. She's convinced I am dependent on my oxygen and I am quick to assure it comes off all the time and I am fine. We all know whose right here. My reality is harsh and it is brutal. But i refuse to let this dim my light. I believe we will get thru this. I have a team on my side and no I do not want to talk about this further. If you've seen my social media please do not ask me to talk about it because I won't. I still have to message people and break some more hearts and its so hard for me to watch people cry because of me. But we are in this together. I don't fight this alone I call my close group "Poppets Warriors" because that is what we are. We find our strength in each other, what I need is prayers.

I guess I need to hop off here I just got a discount code for a tote I need to look at :-D!!

Love Y'all
~Poppet

Smile and Be Kind.

I have always known my disease doesn't just effect me, it affects everyone around me. Some it hits harder then others. Some I didn't even realize how affected they were by my health. A lot has come to light recently. A bit has been going on, but as I tell people how critical my health has gotten I can't help but feel bad because of the pain I am putting people thru. 

I have a lot of hope in this world and I work hard daily to keep my lung function up but I know longer have room for error. Its absolutely heart wrenching to see the sadness in peoples eyes as I tell them how truly sick I am, and how much I keep covered up by makeup and clothes. And no I am not giving you bad news, thats not what this blog is about. What this is about...

... You never know whose life you are touching. You never know who in this world you have affected whether it be in a negative way or a positive way. People remember how you treated them and how you make them feel. We come into contact with many many many people on a daily basis. We have choices on how we react with them and how we treat them. The All Father taught me a long time ago when you go into a public place, put your phone down and be in the moment you never know who will talk to you. You never know what a truly wonderful person you are going to meet. Over the years of frequenting the same spot, or speaking to people, they have not only made an impact on me but I on them. 

One of my favorite delivery guys from Home Health told me recently he always request my supplies because he loves coming to see me and coming to smell the house and what I have been cooking. I have even sent him home with food before. I always look forward to even speaking on the phone with me because he's this positive ball of energy. I always look for my favorite Barista's who have become my friends over the years because I know they will always make me smile.

The point of this?? You never know who you are affecting in your daily life. Its up to use whether its positive or negative. I have had a bit going on in my life and lungs can be a bit dragging but I can't see it as a reason to be sad or take it out on others. It has taught me to always take the time to leave people with a happiness and positivity because you never know what is going on behind that smile or proper outfit. We never know what battle someone is hiding behind a smile or whatever they use to portray a positive light. Life has a domino effect and what you put on someone else they will carry with them.

But I am going to get off of here, I am recovering from the busy busy weekend. 

Love Y'all

~Poppet

Dreams

Time in Wonderland is portrayed as a He, he's very eccentric, self centered, and takes no blames. Thats not what this is about tho, Alice in the begin has nothing positive to say about Time itself because he is a thief, he takes and he takes. But what she comes to learn and what I always tell people, Time is such a precious thing and theres nothing we can do to get back lost time. We also can not go to the past to change what has happened. My life can get quite insane but I was giving this life for a reason. I was giving such a hard battle and God gave me the perfect Wonder Woman. I am not gonna put her credentials on here out of privacy to her, but she's epic at taking care of me and being real with me. She's there for me no matter what, and a lot of our time has recently been spent swooning over Christian Kane, who is now her favorite Chef and I took it personal. Her go to Chef, is no longer her favorite Chef and ohhhhh she still heres about it. lol No really I took it personal.

Wonder Woman is constantly by my side, usually keeping me out of trouble, and constantly reminding me that normal people do not function the way I do lol. If you watch Leverage, I am her Parker minus the part I am not a thief. I mean I touched a 400 degree pan looked at the blisters shrugged it off and went back to cooking. Far from normal. Recently she got a tattoo of Christian, as Chef Eliot. Who I can totally relate to. Cooking in away has saved me. It has giving me a purpose and a way to give back to my community. Wonder Woman ended up getting Christian as a Chef from the episode where he was at Le Cordon Bleu which just happens to be my Alumni. I keep bugging her to get us Kane's Kitchen but we can't rationalize Hulu for one show cause I really do not watch that much TV. Music is my soul and you can find me listen to music and when I feel well I am in the kitchen. I got an email today and I have over 200 artist and yes Kane is one of them.

Wonder Woman has listened to me say the same thing every time we watch Leverage (which is a lot) that I would LOVE to cook with Christian even just for a day. I think we could learn something from each other. I cook in away to save my lungs some stress (lots of ovens, and a lot of rice) and around things I am allergic to. I really do feel for her because she here's the same thing over and over again. I often feel like I leave her hopeless because there is not a thing she can do for my lungs to make feel better and my dreams are quite big. They always have been. And it sound so odd for me to go I want to cook with Christian when I look up to these amazing celebrity Chef's, I mean Chef Ramsey oh my gosh i LOVE him. But something about Christian and his recipes make me go him!! I read his recipes and I was like "Hey!! Wonder Woman some has my attitude in the kitchen!!" I have been drawn to him and the way he cooks. If he learns anything from me as a Chef, its that food allergies, heart disease, and Cystic Fibrosis (very strict diets) can still be fun and flavorful. Theres also the fact I am classically french trained. What I can learn from him?? I am sure that list is endless we as Chef's always learn from each other and I know he uses a lot of spice and Wonder Woman has banned Jalepeno's from are fridge.

In all reality my lungs are not doing that great and while I have energy in these silly lungs of mine I'd love to meet Christian. I would love to give Wonder Woman an epic meal she deserves because she's sacrificed EVERYTHING to give me a quality of life I have lost. She has given up painting her nails cause I can't be around it, she's giving up concerts, and has spent countless hours by my bedside, whether its at home checking up on me, or in the hospitals while I am fighting to hold my own. Me?? While I hate to be selfish, I'd love to have one of my dreams come true. I'd love to not only meet Christian but share a Kitchen with someone I have mad respect for. Which is saying something I kick everyone out of my kitchen. I have never second guessed his character as Chef Eliot because he has also been spot on with his cooking. I really just want one of my dreams to come true.

But I must get off of here because I am actually hungry.
Love Y'all
~Poppet 

Halloween

It's Halloween!! I can't say I am doing much of anything tonight. I think we might be giving out candy but I am not 100% sure. I haven't so much as thought about getting ready for tonight. If I do anything at all it'll be giving out candy. And if I already feel this crappy its unlikely that I will be doing that. It's no secret of how poor my lungs are. It just comes more to light when its your favorite holiday and you are thinking twice about doing nothing. Conserve my energy for another day?? Why yes please, or well just to make it to tonight?? Yeah thats my reality now a days. I am OK with it, I accept my body has its limitations and I also know when I should not be pushing my luck.

So what is a girl to do?? Watch a movie and love on my kitten!! She actually turned a box that has stuff in it into a bed with a rag that she pulled off the tread climber. She's a smart little thing but anyways. I have gotten use to not being able to do certain things especially since I have gotten sicker and my lung function has dropped considerably. There's certain things my lungs just can not handle, and there are certain things that will guarantee me a lung infection. Which is something we absolutely try to avoid. I use to be admitted to the hospital when my lungs are this poorly and now its every day life. So we make the best of what we got. Sometimes that means not doing something you love to ensure your health.

As much as I want to dress up and hand out candy I also have to way the odds. I have to think about the consequence of my action and how far I can push my body. Yesterday I walked from the truck to a place to sit at a local restaurant and I was visibly short of breath. I wrote it off to Wonder Woman as I was OK. Which I was and she's like no I am a nurse you can not full me. So I can't help but wonder what getting up and down to hand out candy would do to me. After the effort of getting a costume together. So it sounds like it won't end well which I am ok with. There is much more important things I want to do with my time like going to see the All Father. I also have tattoo's coming up and I much rather be healthy for them!!

But I guess I best get off of here I have left overs calling my name.
Love Y'all
~Poppet

I haven't been up to much lately. I have been working on my sleeve and doing Qi Kong that the All Father has introduced me to recently. I am really enjoying it. It focuses on breathing and small even movements. Its a low stress impact on your body and it also brings in proper diet. Tho I usually follow a proper diet anyways its always nice to have new ideas for food as long as I can eat it of course. A long with Qi Kong I also use mediation to focus my mind. Yes there is a point to this, when battling a illness or a disease of any kind its not just physical health its your entire body. Health is so much more then just pumping your body full a medicine and possible surgeries it, mental heath, its proper diet, its exercise that your body can handle. And for some its about spiritual health. I am not gonna for God down your throat at all, and many people have different spiritual beliefs this is jut something personal to me. 

So often alls I hear is, Meds, Chest PT, Saline. What is Superman doing for you?? Why isn't more being done?? There is only so much he can do, there is only so much medicine can do. I think people forget this. I am so blessed I have people who surround me and encourage me to be a better me. I get texts sometimes from Ms. J. showing me pics of foods that are good for my lungs. I have a lists of food that are "mucus producing" which I try to avoid. I am vegan, and gluten free for my heart. I also eat a high salt, high cal diet thats decent in sugar. I also learned that small frequent meals is much better then a large meal. I also have to eat low acidic foods because of the Pulmozyne but thats OK we found a balance of what works.

When it comes to spiritual health I also combine this with mental health in this picture. I know the CF foundation has an entire section devoted to this and I follow a lot of people that are so depressed because of their health. Wonder Woman has told me more then once that most people have a "why me" attitude and sometimes I admit i do myself. Which why I always take time to center myself. Usually thru meditation or  Qi Kong. I focus on my breathing and centering myself with positive energy. I even pray. God can work miracles. I have tried to reach to some people who do react to their health in a negative and let them know I have your disease to we can get thru this together but they are so quick to shut me down. Which I guess lead by example is what I have to do here.  

We as society so often forget. Being chronically ill and coping with a disease is SO much more then science. It is SO much more then hospitals and pumping your body full of chemicals. It's about maintaining a healthy diet, its about being active even if your just sitting there and doing exercise, its about staying true to what you love. Its about surrounding yourself by the people you love. I know Wonder Woman has sacrificed everything for me, and the All Father is always checking up on me and always finding ways to improve my spiritual health. I wish there was a big community for coming together in a positive way and sharing ways that we as a community can work together find ways to cope in a healthy way. 

I guess I will leave this here, I made a lovely hummus high in salt and low in fat and its calling my name!!

Love Y'all

~poppet

inspiration

A few things have been going on lately but nothing that exciting for the most part. I got to spend some time with the All Father recently. He decided to learn Qi Gong and has been kind enough to dedicate sometime with me to help me learn. Its not stressful on the body and its an ancient art form and he knows i loved Martial Arts. I have to say after this weekend and just 15 mins of doing the basic beginners part my lungs uncramped just a little bit. Enough for me to get relief from the intense pain I can feel from CF. You know I can live with the pain, I do it daily and its not the much for me anymore I see it as a daily thing and a lot of the pain I had came from this weekend. We had a major storm hit us. It made me so sick. I remember tell the All Father friday I didn't trust the storms path and we got hit hard. My poor little lungs got beat up pretty badly and my sweet Kitten curled up on my right side and let me breathe on her as she always does on bad days. We finally got my oxygen back down to 3 and I am so so so glad that I have the option of Qi Gong to help now. 

I also had to giggle at the fact he know keeps rice and soy sauce at his house. I am not sure its for me but to have my favorite option to eat at his house is just epic. 

I always here from my friends and how sad they are for me but the thing is, they don't need to be sad for me. I do not lead that sad of a life. Just the opposite. I have true friends who love me, and I have 2 parents that love me. I am also a stay at home kitty mommy that follows her true passion in life with food and makeup. I can also donate my time out of love and compassion. I do not alway charge people for my work, there are times I give my time to them with no questions asked. This is a true joy I want people to feel. I want people to know that kindness in this world still exist. I don't want anyone to feel they owe something for whatever it is they are asking for. Just something I learned from the insanity my life brings me. 

I also found I love educating people on my crazy life. My insanity that people see when they over look my joy will one day help someone that I have never met. And that right there is worth it. Yes this weekend was pretty painful, yes I had a concerned family and kitten. But I made it thru somehow (we all know Wonder Woman got me thru it) and now I can help someone else thru it. And isn't that what life is all about?? Helping others?? Maybe thats something I learned from my family or maybe its something I learned from friends who have been there at my worst. Or the shirt that Poison Ivey had made for me that I now where when I have to go into the hospital for good luck. But whatever it is I hope I can pass this onto someone. Unconditional love, and finding your true passion in life. 

I may have 3 diseases that beat me down and leave me breathless, but my life is so much more then that. I have people surrounding me helping me survive this life, helping fight for my life to live another day, to even add years to my life. I want people to not look at my hardships I want people to look at the joy in my life. I always tell the All Father and Wonder Woman i am going to change this world and that I will do!! I have no idea how I am going to do this but I am going to do this!! 

Just a little inspiration for y'all today!!

Love Y'all

~Poppet

ER update

Friday I spent some time in the ER, it had been a year and some people were a bit worried about me!! That's how frequent I show up at those places. If I haven't mentioned I've had a pretty bad lung infection on top of my already poor lungs. On good days I get about a liter in my lungs on a good day. Which isn't much.

Friday morning I had felt my normal, a bit short of breath but OK to do a few minor things so around lunch I died my roots to my hair, had lunch and went about my normal day of a Sons marathon. And out of nowhere I could not catch my breath. My chest hurt, my lungs were tight and I had taking my normal meds and nothing helped so I called Wonder Woman and she could just here how bad it was. While I was waiting on her I did a duo Neb it see if for any relief And none. It was quite frustrating cause I didn't want to get admitted and thankful I didn't as of now. We keep a close eye on my breathing anyways and one wrong thing we treat. Turns out I just needed a Doxi IV pick me up. The PA was brilliant, she listened to me, treated me with what I needed and no extra and left the decisions of admittance up to me. I was like let's go home!! And of course unde the close eye of Wonder Woman. So I am temporally back to base line but we also got to see how bad my lungs looked and we also think my lungs are just getting this bad!! The PA figured out quickly I am not one to complain which Wonder Woman confirmed which I am not I only tell people when I need help. So she ran everything to clear all possibilities of what could be wrong which was lovely of her!!

I'll keep an eye on everything as we always do and might call back for some more doxi but unsure at this point I'll see how I feel in a few days. This has been my normal, quite poor lung function, sats as low as 80 so uh I do what I can when I am feeling OK, otherwise nothing is going on just spending quality time with my animals!! Lol!!

But ima hop off here and hang with the fur babies
Love Y'all
~Poppet

Wonder Womans Birthday

So this past week was Wonder Woman's Birthday!! I have been absolutely breathless this past week to the point I had  to go on stronger antibiotics. We had frequent stopping and I even sat in the back of her class for 4 hours coughing and wheezing. No one seemed to notice because its so normal for me and most of them already know me. She also talked about me prior to and told them I am a sassy fiesty Chef. Why was I at her work for her birthday?? Well I made pumpkin muffins for her co-workers and her students. After we went to Crique De Soliel to celebrate. I love Cirque as does she so we had a blast. The spider kept chirping at me lol it was quite lovely. I couldn't keep my oxygen connected and like the kid I am I had cotton candy and got a scarf to go with my collection!! haha We both really enjoyed it though. We sorta swapped concerts for Cirque and even though I miss going to concerts I am sure my lungs appreciate it.

As for my lungs I have a terrible infection. We were a bit concerned when I was putting on shoes and lost my breath pretty badly. But we don't think much of it at the same time because I mean my lungs have been that way all summer long. With the major set back its often difficult to know what is concerning and what isn't. When I was at Endo recently my SATS were 80 and my sweet nurse was your breathing your hearts ticking and your talking fine i am not gonna worry about it and its like I like you!! We can be friends!! I am sure Wonder Woman feels the same. We are also unsure how bad this infection is and if its permanent or not. But again this where we are at in life. And though no one wants to here it, I have the best support system a girl could ask for.

With all this going on I am not sure I will be able to dress up for halloween or not. I am torn between 2 looks. I am sure you can guess one is Alice. But there is also my love for Harley Quinn. Yes I get it its very popular but I wouldn't do modern day Har. I would do classic Har, and know which to outfits I want for both Alice and Har but there both a bit pricy and I am under a 26 inch waste so I am not sure if that one outfit will fit cause that is the smallest size they make. Yes this is my concern right now. Keeping it real like I always do. Halloween is my favorite holiday to the point its a way of life for me. I have always loved it and I am sure I could pull off tricker treating if  I could but I mean walking a distance is just to much for me!! Not to mention all the people I'd be around to make my infection worse. Which is something we do not want to do. So everything is up in the air for right now because my first concern is the beautiful bride I am working with and tattoos!!

But I have Sons on so I will jump off here.
Love Y'all
~Poppet 

Cap Wild Bill and Introduction to Ms. J

I guess while I am waiting for my lunch to cook I should up date this. Theres not been to much going on but I figured I had enough to update this. I had a bit of confimation my lungs are a bit poor. I went to a doc recently (not Superman) and my Sats were sitting at 80 on oxygen which is a bit unnerving but I mean I have really really bad lung disease so I am not gonna complain about it at all.

I also was able to meet Cap Wild Bill of the Deadliest Catch!! No he is not a part of the Time Bandit but one of my favorites anyway!! I saw he was coming to my area and I just hardcore fangirled!! I could barely put into words to Wonder Woman that he was coming here!! I called in my antibiotics. I got on yet another round which my Sats were still super low on them and I got to meet him!! Such a kind person it was such a blessing to meet him and I reached out to him and let him know that and thanked him for his time. I think a lot of times we as humans forget how precious time is and for him to share some of his time with was such a blessing and an honor. I was quite beside myself especially when he retweeted me and and told me I was sweet heart!! *insert happy tears and Wonder Woman calming my steroid induced moment hear.* No really Cap Wild Bill on the off chance you ever read this it was such a wonderful moment and made up for such an awful summer I have had and I am so grateful you took the time to come to my area and meet your fans. I have followed the show from the begin so to meet you was such an honor!! And I really did cry when I saw you retweeted me!! Happy tears of course. I also did go see my Artist and have a set date to get my arm tattooed!! 

In other news I have been spending some time with Ms. J and the All Father this summer when I wasn't in bed hacking and wheezing. Or just fighting to catch my breath. I love them and truly love spending time with them because they always make me feel so loved and they always guide me in the right direction and they told me yesterday how proud they were of me. I always tell them I am gonna change the world but have no idea how I am going to do this. They always encourage me to be me. I have reason in this world to be cold and bitter but I choose happiness. I wake up and take on the day with a smile on my face and be polite to everyone I see. A person's anger toward you should never strike anger in you back. Instead you should take a step back and OK I am sorry you are angry maybe you just need a polite smile and words of encouragement. Ms. J will end up with a Super Hero name soon. I am not sure which one I want to pick yet. A part of me goes Frida!! She's part of Norse Mythology or Black Canary because I truly love her character to. I follow a lot DC Villains and not heroes so to think of a hero will take me a minute. When it comes to Marvel its usually men I follow. Tho she COULD be Black Widow but we will see as we progress from here. I think Ms. J is a super hero name all in itself. Yes this her introduction to my blog. Ms. J has become a part of my life and I absolutely love that she is in my life because she's a beautiful person and has a beautiful soul. She's always a soft reminder that its always good to put positive energy out there and I truly to do love her!!

I saw her and the All Father yesterday afternoon and it was a lovely visit I spent the evening with them and got a recipe from them to for Gluten Free bread so I hope to make some of that this weekend. I should have everything I need to make it. But I guess I should get off of here I have quite a busy day ahead of me. 

Love Y'all

~Poppet

Short Update

Not a lot has been going on cause well this summer has taking a toll. I got my PFs back up to have them just drop right back down. It's the heat. My body does not cope with this incredibly high heat. My breath is short, and theres days where I can't even finish cooking. Let alone eat well cause I have to eat between breaths which lets face it can be a bit hard...  There are days where you have to pick on or the other. But we fight to keep me home. I feel like I am always on something. But I mean lets fave it happens. I was half praying for iron to be low for an explanation other then I have stupid lungs but it was not that low at all. So its just these silly lungs. Or it could be the whole in my heart but that is also very unlikely cause it took an MRI to find it. My entire summer has been spent in bed reading and do moderate exercise when I can to keep muscles strong. Which is why I have been MIA. My iPad keyboard broke so I wasn't able to update.

I am trying to get my lungs working decently for Wonder Womans birthday coming up so she won't have to worry about me. There has been a few of her birthdays spent with me being sick. Whether is a procedure or me just being sick we have spent a few with me quite poorly. Which isn't fair to her. But she takes in stride and makes the best of my crazy life. Which I am beyond grateful for. She really is the rock in my insanity.

There really is not much to update because I haven't really been doing anything. I just wanted to get on here because I know some people check on this regularly for updates cause I other wise will not talk about my health. It's been a LONG hectic summer with the heat and the most I have done is pup sit the All Fathers puppy dog.

Ima hop here eat some chips then put food away!!

Love Y'all
~Poppet

Frusterated

While I am waiting for my Zofran to kick in so I can take some meds. I figured I might as well update this as I have been a bit frustrated. This set back has caused a few issues in my life that are out of my control and with the steroids I have to step back and calm down.

To start off, I wanted to do something with the All Father today but because of the hot hot weather and the rain we are supposed to have we all agreed it was best I stay calm and not put me in a car. To wake up to deent weather for the start. Which I had accidentally fell back asleep this morning after I got up to take meds to lessen the side effects of Pulmozyne I woke pretty dehydrated. We are working  on that still. 3rd liter, and who knows how much liquids. Dehydration makes me BP low so I he been working on that to. Right after I woke up and got fluids running I of course do treatment and a part of the piece that connects my tubing to the Neb broke off, which we think I can rig it until I can get a new script for a new Neb on Monday. I called the people that use my Neb and they can't get me a new one until I get a new script because I dont order my Neb cups thru that company my script lapsed. It's all good tho Wonder Woman is here!!

Then of course with my current health set back I have pretty much just dropped off the face of the earth. As I spend most of my day trying to stabalize levels, coping with low levels, or doing numerous amounts of treatment. Which drains me so I pretty much just recluse and do nothing. I listen to a movie while trying to balance out my life. So in doing this I have quite a few people messaging me asking why I am gone and why I am ignoring them. A few even being a bit snippy with me. Wonder Woman just makes a face like oh dear because she knows my fuse is short thanks to all the steroids she put me on. I have told a few of them it's not personal I am just sick. I am so tired and so drained of everything in me you can see it in my eyes. When I get a moment to sit with out treatments or pills or food to stable off whatever is lo whether it's my BP or sugar I just want to sit there and close my eyes because I am so physically drained. I am beyond exhausted. And no matter what I say no one is going to listen so some I just don't bother. I just simply say I'm sorry I am really sick at the moment and leave it at that. I don't want to let the steroids get the best of me. I know it's mind over matter, I just wish people to took the time to understand and believe me. Just simply believe me. I learned a long time ago you just can't make people understand no matter how hard you try. I am just drained.

But I best get off here and find more water to down.
Love Y'all
~Poppet

honestly

I am not sure I am gonna post this yet but as I sit and so breathing treatment just to catch my breath for MORE PT I figured I'd be honest on here. I promised Wonder Woman a long time ago I'd be nothing but honest with this blog no matter how heart wrenching my life gets.

If you know me you know the last few weeks have been exetremely hard lung wise and we've had a set back. Which I am always confident I can fight this. I may have come off prednisone to soon, it may be the heat, or we may be facing a pretty crap reality when it comes to my CF. I might be coming to the part where I am constantly short of breath. I am constantly fighting and we look forward to good days, we take advantage of good days. We make the best of the bad. There is nothing more heart breaking then the person who selflessly sacrafices herself for me looks me in the eyes and says we may be at the part of the disease where you are just constantly short of breath and we make your breathing as easy possible. That's right easy as possible, not better, easier. No one wants to hear this let alone witness this.

No one wants to face things I have to on a daily basis. No one wants to watch someone they love struggle. I also don't want to watch and see the sadness in people's eyes. I don't want to see some one hold back tears because once again I am sick. There is a lot of guilt that goes with having a horrid chronic illness that's progressive. You feel guilty that you put so much on people, you feel your the reason for their sadness. It's normal to feel this I am human. But use those feelings for good push thru and fight. Fight. Fight hard and then push a little harder and remind people you got this and you will survive because that's what you do. You survive. And you pray. Pray with meaning and God will answer.

I had two close friends check up on me recently and they both live over seas, I have recently gave up Facebook and they didn't know cause I sorta just disapearred and they were worried. And one told me today I was there Wonder Woman, I kindly informed them no no I am just an average girl because I am. No more no less I am just me. They told no I fight for survival and inspire others and that makes me hero. I don't see myself that way, it gave me a boost I needed after all this going on. Sometimes I just need a soft reminder yes this gets tough and bad but I got this.

I have never lived my life for others, I do me and try to leave a postive impression on everyone it's what I do it's who I am. I'll leave you with this. Fight like a girl battling cystic fibrosis, fight for what you love, fight for your dreams, and fight for what is right. Stand strong in the face of diversity and know God gave you this life for a reason, and your here for a purpose and he will guide you thru this battle.

Love y'all
~poppet 

Tis the season for SALT

Tis the season for hot weather, excessive salt, and a lot of saline. I easily look at 3 liters a day and when I go outside the heat gives me instant chest pain and I look at really low blood pressure almost 3-4 times a day!! Why you may ask because I live with two disease that deplete my salt. Which makes me super sick.

POTS!! You haven't heard me talk to about this one a lot but it's the season here it flares. Heat and POTS do not mix well in me anyways. I get hot and I pass out. I also dehydrate very very easily because of this silly disease so I have upped all m fluids and salt including the ones i eat or drink. I eat almost hourly and have salted snacks strategically placed all over the house and down a redicious amount of water. Then when I dehyrate my secretions get solid and this ends very very badly. This basically means I struggle to breathe Like Wonder Woman concerned fight to stay out of the hospital sick. Which is not fun on either one us. I have been working so hard on a daily basis just to keep my BP and I have been spending a lot of time in my room because I can control the air temp in here better then an open place.

At the same time it is absolutely no excuse not to get in small amounts of exercises on the moments I am feeling OK. Yes that's right. If I have ONE moment I am feeling OK and I have spiked my BP and breathing decently enough I am doing small amounts of exercise to keep my lungs moving secretions out. It may only be 5 minuets some days but I can't find an excuse good enough to not exercise and keep my lungs working well enough. Some days there are actual reasons I do not exercise because Wonder Woman doesn't want to pic me up off the floor. And it's never OK to exercise if you lose breath hen you sit up which even I have been there a LOT.

Life has been an interesting balance of not feeling well at all, being super exhausted from breathing a lone, and still fighting to feel well enough to get up and do something for 5 mins and cook!! The one night I was to breathless to cook. We managed some how!!

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

Update

I haven't been on here in a bit!! Well its that I have not been on my computer and I don't often update from my iPad because I am not on that as I use to be either. Yes i still play games but when I do I am in my bed propped up playing the WiiU so I don't have to exert more energy then I have to and I am in a bed the massages to loosen up the mucus in my lungs. Yes everything revolves around my lungs.

Not much has been going on. Taming my lung infection again that never goes away. My PFs dropped by 40-50 points and got stuck on around of antibiotics just in time for the 4th of July!! I was able to breathe enough to spend sometime with the All Father!! We had a get together at his house and with a bunch of people I don't know. However it was fabulous. I met a few people who knew people with CF. I use the word knew because they lost theirs friends to CF. I am not sure about their stories but this was before pulmozyne existed and when I hear these stories it makes me fight that much harder. Will I get my lung function to 450?? NO. I will not get back to a high lung function. I am on oxygen for the rest of my life. Or until I can qualify and get new lungs which I do not. Which I am OK with this. Because there is so much people do not realize about transplants. Which wishing me new lungs is almost a death sentence. I am willing to fight and be on oxygen to keep my life. I understand my sacrifices but I also understand life with transplant. I am all about extended my life which is hard work and dedication which always means something has to give somewhere else in my life. But anyways.

When I went to the All Fathers I offered to grill with him (oxygen off but in reach distance of course) and he's like I assure i didn't call you here to cook and I assured its OK I have problem cooking Wonder Woman knew I'd sorta take over. Well I was teaching the All Father to grill properly. Thats right!! Like a Chef. He's such a wonderful student and always enjoying cooking with him and truly love cooking with Ms. J. to!! The 4th itself I didn't do anything. As I am on Doxi and pushing myself to the limit isn't an option. And of course I got Rubes so I have to make sure she is safe on days where there are fireworks. The poor thing needs a chin to curl under and its usually mine. Not to mention fireworks are a trigger.

Outside of this I really haven't been doing anything. A lot of my summer days are spent inside and not doing much of anything. I know this is a short update but I really haven't been up to much of anything except coping with the side effect of a very harsh drug. IF I do go out, its with my Wonder Woman or the All Father and I am in a controlled setting with one or the other going "please don't smell that" (i smell everything its how I cook and perfumes or oils i should say intrigue me) or placing in an air conditioned setting.

But  I guess I need to figure out what's for lunch!! I have this lovely new cook book that I am working with thanks to Ms. J!! I also want to make some cinnamon buns to not sure when I will get around to doing that though.

Love Y'all
~Poppet 

Its been a bit since I updated. There really hasn't been much to update about. Most of my days are spent sitting around mostly coloring to reduce my stress levels. I have been out a few time which has consistently left my breathless, tired, and sick. I have come home gasping for air at times laying  down with Wonder Woman connecting me to an IV. Its almost a never ending fight but I mean its no different from any other day really. Some days I am just breathless and other days I have enough air in my lungs to get by for the day. But this never an excuse or a reason to not get things done. Life doesn't stop because I don't feel good and I refuse to let life pass me by because I am short of breath or a bit poorly. I only have one life to live and to let some silly disease stop me from doing what I love isn't going to happen while I have a say in it.

I am constantly reminded how blessed I am to be 29 and still have my own lungs and still be able to get out and do things some days. I have worked so hard to get where I am and I will continue to work to keep these lungs working well enough. Its an endless battle, there is NO end to this at all, ever. I have such an amazing medical team that has worked endlessly with me to stay as healthy as I can. Its not an easy battle it takes endless work. You battle the same thing day in and day out. You go to bed every night knowing all that work you did that day has been done all again the next day. There is no break, there is no oh well I will skip a treatment. There is no maybe tomorrow... You get up no matter how tired or sick you are. You get up, you do treatment you know is gonna make you sick. You sit on a vest, you use devices, and sometimes you have someone pound on your back to breathe. Me well I also connected to an IV to help keep things working. I take a handful of pills a couple times a day to just get up and do it again. I was half joking with Lady Sif that I needed a red cross on a bag she told me that wasn't a terrible idea since HALF my bag if not more is medication so when I am out and about I can stop and do the treatment I need to do. My health doesn't take a break, it doesn't take a vacation at all. Its endless work.

Some days I swear my battle is getting harder and I refuse to let this stop me. And thats OK I am tough girl I can handle this. I am so blessed that my friends take time out of there day to check up on me and see how I am. To come over and enjoy there time with me. Or link Wiis with me so we can battle it out.

So I am paying more attention to the TV then I am to this blog which is shocking but such a good show so I will leave you with this. Never put off things you can do today and make time for those you love.

Love Y'all
~Poppet 

Milk is the enemy!!

Its Food Allergy Awareness month and Cystic Fibrosis Awareness month. And I am equally passionate about both and never have any idea where to start but this year it was different.

Its tradition that me and Wonder Woman go shopping the weak before Mothers Day. We go to the mall enjoy ourselves and we of course get coffee!! We had gone to Michael Kors, Dillards and we stopped for Starbucks on the way to Sephora. I ordered my drink and they asked me if I wanted milk I said no thank you I am allergic to milk. I ordered it with Chai and Vanilla to syrups that are well flavored sugar. We went like we alway do and I took a sip of my drink. I was like OMG this is Mocha this not what I ordered. Wonder Woman quickly looked back at me and we went off to the side and I said try this you need to try this. To my horror it was indeed Mocha. Mocha is a milk based product. I immediately took all of my medication and we went back and gave them my drink and I said does this have mocha in it?? I explained again I had a milk allergy and I wanted chia. The guy was like the righten says. Im like no what was put in it?? SO the girl that rung us up was like I am sorry I really did think you wanted Mocha. I am like no you don't understand this is a true allergy. So at this point I am starting to take the rest of my meds because the milk is hitting my system with in minutes. They gave me another drink and the meds aren't kicking in fast enough. I am like hey lets go here really quick I want to stay close to the hospital in case this is gonna hit me hard. It didn't thankfully and I was OK about 10-15 minutes later.

So I looked at Wonder Woman and told her I just can't let this go this is a huge opportunity for education but I do not want any one fired I just want them aware of the severe consequences that could happen to someone with a food allergy. So I emailed Starbucks and was so scared they were gonna right me off as whatever. Just the opposite they took it very seriously. I said it was not the location linked to my account and I do not want any fired I just want people aware of the consequences of what can happen with food allergies. It's not that i accepted another milk, i declined any milk as I like my coffee black. They put a milk based product in my coffee. I did tell them the actual location. The situation was handled very well.

People are quite shocked I didn't proceed with anger after I explained my allergy and that I just wanted education. People do not learn from anger. They learn from compassion and education. When people order a drink they want exactly what they order. They order what is safe for them to eat or drink. This is a huge opportunity to explain. Allergies can kill. You could have killed me, especially since I have compromised airways due to CF. I am so blessed I had a nurse with me. I am so blessed I had the opportunity to act instead of react. I also wonder what type of education baristas have on Food Allergies. Has this one person ever dealt with them before?? Has she had proper education?? If I don't educate then who will?? I am OK and still on a decent amount of benadryl but I am so blessed this wasn't a worse reaction because food allergies are deadly. They can kill people. You hear about a food allergy and do not quite understand them ask the person to clarify. We are MORE then happy to educate you. I will kindly explain what an allergy TRULY is and what an intolerance is.

Food Allergies are anything that compromises the immune system. Its systemic and affect the lungs, heart, skin, airways, and digest system. It is immediate. Some people present with hives, some present with wheezing, and other present with other various symptoms. Action needs to be immediate and if someone ask for help let them instruct you further. All items being used on the persons food need to be cleaned as well as your hands. Alway always always take any allergy seriously!! Please be aware of all this and further educate yourself on anaphylaxis.

Love Y'all
~Poppet 

Wonderland

With the new Wonderland movie coming out my social media has been loaded with Alice and her crew and in turn everyone who knows me has endlessly heard about Wonderland. Which really is no different from any other day of the week and my dedication to Wonderland goes as far as tattoos on my lower right arm with my twist to it. I have always told some people close to me that Wonderland is relatable which usually gets me some twisted looks. "Your crazy?!?!" Well yes in a sense lol but not to the sense they infer it to be. Its no secret that people say Wonderland is based on drugs and psych disease as I just upset every Wonderland fan thats against this statement. Then I happened upon a meme relating Alice to POTS which is one the of  the diseases I battle. Is the effort of getting up to make a daisy change worth it?? Referring the effort of getting up while having POTS is an effort but so is the effort to get up with crap lungs that CF has left me. To further go on to say that like Alice my reality is different from yours. This is the BIGGEST controversial statement I say for most people. Most people tell me how dare I say that I should see myself the same as everyone else and try to convince that I need to see myself the same or as Wonder Woman tells me a lot of people see me as an inspiration which I quickly shut down. Though I will quickly tell you I am Alice and this is my Wonderland what I don't tell you is I can easily relate to all the characters...

Lets start with the Mad Hatter who sits with the March Hare who is in a perpetual tea party because his pocket watch broke. (read the book). So many people have sacrificed their life to help me with mine. They've giving up everything for me to give me a quality of life. What really hit home to while I was trying to convince Wonder Woman to do gel nails she promptly told me "Why would I do something you can't be around." Here I am trying to convince her to do something as silly as painting her nails and she says that. She sacrifices something so many take for granted to keep me healthy. Like the Mad Hatter she takes the patience to sit with me while I go thru the insanity of my life. 

Cheshire!! The cat that everyone loves to send me (not complaining) cause I am the crazy cat lady. He is always the voice of reason with in Wonderland. He has this twisted logic of blatant reality. "You are among the mad." "Why does it matter which way you go when you don't know where you going." Trivial but real. I also have to say you have to half mad to smile and live with a disease you know will kill you one day. I am always up front with my reality as is my health care team. He may disappear from the picture but he is always there. He never leaves but at times he leaves his smile as a way to say I am here but not gone. 

Caterpillar or Abselom as he is called in the Tim Burton movie. He always ask rather blunt difficult question. We often face difficult questions. Transplant?? Lung function?? Is there anymore options?? Not to mention tough questions we have to face with our loved ones... Are your prepared for all this?? Can you handle how crap my life can get?? We have to have difficult conversations all the time especially when I was writing my will are you OK wit this life decision?? I am not gonna elaborate much but we've had quite blunt real convo's about life. 

The red queen is always angry and want's complete control of every situation. To wear her King is a bit more lax about things. (read the book) I am not angry though I have every right to be though I always have tight control of the situation because I need to. At the end of the day my health pays the consequences no one else. If someone defy's her "off with her head" people almost live in fear of her. Though I have learned to not live in fear of my disease. There are times that it does get quite real. Yes my disease is the red queen and me the person I want to be is the king at times. You want to do this?? HAHA think again!! Stairs?? HA!! Concerts?? Forget about it!! Last minute plans?? Not Happening!!

And the most important to this entire list of characters the White Rabbit who is contasntly looking at his watch going "Im late!! Im late!!"He's so focused on the time and where he needs to be. Which I am typically always late... But here is the thing. Time is precious!! It is so precious. No one says tomorrow is guaranteed. No one says my healthy is not gonna take a turn for the worst no matter how hard we work. Be with people you love. Make time for them and run around looking at your watch as if your late to be where you want to be and with who you want to be. Growing up with a nurse you realize at a young age its not the length of life you live but the quality of it and doing what you love to do. Every moment is precious and a choice to make a change!!

As always 

Love

~Poppet 

...

I recently had someone message me and they saw the oxygen and asked if I had Pulmonary Hypertension and I explained that I didn't but knew a bit about it. They replied back they were hoping I had it to so someone could understand what they were going thru. I am not gonna put anymore out there then this because I really didn't ask to put them in my blog but this needed a bit of an explanation...

My biggest complaint health wise is no one truly "gets" what I go thru. Wonder Woman does to an extent but it's very medical based. It's very hard to find someone who "gets it" from a patients point of view and what they truly go thru. A lot of people think I over exaggerated what I go thru. Or that I will one day get better. There's a list go things people expect out of me that I really can not guarantee or they think I can do more then what I say I can do. I got a text from a friend recently that said "i don't understand how a shower is so stressful you cook." Its like first of all I have food allergies i HAVE to cook every meal. Whether its thrown into the oven or i take the time to cook something I don't cook I don't eat. That simple. Showers or bath take everything out of me. I am short of breath, I am dizzy, my heart races, and my chest gets tight. I have to stop and catch my breath. Getting ready is exhausting. I give myself 3 hours to get ready so I can take the time to not exhaust myself. Cooking is just as exhausting but I can sit down at time needless to say I am exhausted all the time. I am also in a lot of pain on any giving day and now I am dealing with stomach side effects of a new meds which the meds make me sleepy or i just don't even eat much.

In all honesty I down play what I go thru in real life. I often don't even mention how poor I feel because whats the point?? I cope with it very well and if I can't i say something and  get the help i need.

Back to the point. It was so nice to talk to someone who gets it. I don't have to explain things to and I can relate to. It's so rare I get to talk to someone who totally understand what I am going thru and can relate to me on a level most people can not. They understand what my reality is and empathizes with me and the reasons why you want to push somethings off. What the future looks like. I almost never get to talk to someone about this. Lady Sif gets what I go thru being chronically ill and all the meds and drama that goes with it. But I had lost the one person that got what it was like to live with lung disease. And when I got that news I broke down. I lost not only someone who I was close with but to lose someone who fights with you is just devastating. She was a huge part of my life since high school so that whole situation just broke my heart.

Most days I truly get "serisouly your chronically how much do you really do??" The truth is... A lot more than you do. You go to work, class and eat which probably you don't have to cook at times. Or if your to tired to cook you can eat something from the local burger joint. Me?? I am a personal Chef, and also do makeup on the side for those who ask. I cook 4-6 meals a day, I do hours worth of breathing treatments and chest PT, I go to appointments, take hands full of drugs a couple times a day, and still have to lead a normal life. Don't be so fast to judge. Most of us our not lazy we do much more then you ever thought of. And if you have a disease its OK to reach out to someone like you just to understand you. And for those who love someone who is sick all the time. Be patient they are fighting a battle bigger then you could ever imagine.

Love Y'all
~Poppet

Fluffy!!

The past week has been rough. Not only was I sick and have been making never ended phone calls and had a bit of a set back. I did a PF to monitor my lung function at home and it was really low and I didn't think much of it as it happens. Well I was sick. I was on steroids, Benadryl, antibiotics, my oxygen was turned up and was doing meds regularly with PT. It was to the point I was like Wonder Woman after Saturday if I need to go in you can take but I want my Saturday night. Here's why.

I went to see the comedian Fluffy (seriously google him I have never laughed so hard). A couple weeks ago I was getting a tattoo and he was on the TV and my artist left it on and was having a bit of a giggle cause I had to stay still cause well ink is permanent. And next thing I here is "Poppet he's coming to our area, tomorrow you buy tickets." OK, thats fine... Can I borrow your credit card :-D!! lol. So I called got details and what was safe for lungs and got tickets. Well about a week or so before the show I got an email about upgrading tickets and meeting him. OMG. So I go to down the hall cause it was late and got Wonder Woman!! Look at this!! She immediately gave me the OK to call get details and order them. I told her I would tomorrow once I get settled at the All Fathers since I was house sitting.  Got everything set. Couldn't remember whose name I used to buy things but we were both there the day of.

So Saturday I got up and I'm excited. I do all things I need to do and start to do my makeup. Usually its whatever I make it look neat and proper and go with the flow but now I am meeting this guy that has been making me laugh and cheer up thru all the up and downs my life has giving me. Yes I mean I have my friends that do that to but sometimes its not to turn off the phone and just laugh. Then being a girl I had no idea what to wear but wanted to look decent and not sick!! I wore legging and a sweater i LOVE and didn't even think of the fact I'd have to stand out side in the freezing cold for an extended period of time but sucked it up and entertained myself and  Wonder Woman to meet him!! OMG. OH. MY. GOSH. I got to sit down for a few minutes catch my breath and such and then I got to meet him. I also got to see Wonder Woman smile and be happy!! I put my stuff down and he comes up to me and ask if he could give me a hug. OF COURSE!! I got a huge hug from him. Even Wonder Woman was like he gave you a big hug!! He was so nice and he told me to be careful I am sure it was because of my oxygen. I promised him I would and I had meds. It was such a wonderful night. I learned I still could walk up a flight of stares. Well I can but it hurts. I also got to exercise my lungs by laughing and enjoying myself and seeing Wonder Woman happy. That night made a week worth of stress and tears worth it. I fought so hard to be OK for that night just so I could enjoy myself with worrying to much about my health. I can't say I worried much at all once I was inside.

I am sure he will never realize this but he had a huge impact on not only me but Wonder Woman. He's the first comedian we put on when we need a laugh and I am so blessed I had the opportunity to meet him.

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

positive

I'm exhausted and sick and waiting for a company to call me back so I can call my pharmacy by a certain but it does not seem to be happening. I am on steroids so I am trying to keep my emotions in check. Its no ones fault at all but its OK things will work out. I promised my wonderful nurse Pumpkin Muffins (no i have not been in) so i decided to bake. The act of making food is what makes me happy. Not eating it but making it. Yes I love food to but theres nothing better then cooking. I am tired, short of breath, oxygen turned up, and little sleep, but its a passion and an honor to cook for nurses. While I was baking I got a phone call back from someone and I made the comment its beautiful and the sun is shining it makes for a lovely day. Then you hear in the background "its cold!!" Ok I have a fever I am not cold at all, in fact the 66 degree temp is just cool enough I am not flushed and gasping for air. But made me think of a convo I had yesterday...

Someone who will remain nameless messaged and we were chatting and they said "id rather have an easy life then not taking things for granted. I read the texts put my phone down said something to Wonder Woman. She came into the sunroom to tell me something and I figured as always i was over reacting its what I do. She sided with me. I don't portray that my life is complicated and stressful in my regular life. Why I have this thing. I tell people I am OK or Good thats it. They also told me you can't simply choose happiness. Which I of course replied why can't you?? Does require being mentally strong?? Yep!! Does require the beauty in life being first?? Yep!! It's our choice to find the good in life. Yes it's harder for some then others but it starts with positive thinking. Or as Alice would say "I believe in as many as 6 impossible things before breakfast." Huge alice fan by the way. I could sit here and tell you every little thing that is wrong with me. Which I am sure I just did in a way in the first paragraph. Or I could tell you. My pharmacist is incredibly sweet for looking out for me. The people I have been talking to have be nice so far. Muffins are baked for people who appericaite food more then anyone. That is where it starts. Life is about how you choose to react to it. My life up until now has not been easy. I had to fight for a lot in my life and my past is not rainbows and sunshine. But i have learned if we find one good thing in every day we can easily find ways to brighten are day. Is it "cold" well yes probably but the sun is out, my cat is happy, I don't have to cope with poor weather, and i have not yet been bit Kittie Cute.

Life is one of the hardest things to cope with it. I get it!! I am chronically ill and every day is a battle in its self. But every day I sit down in my sunroom rain or shine. I watch this little grey ball of fur cry her way into the sunroom because her majesty just can't be bothered to open the door. She'll either sit right next to me during treatment or lay in the sun. After all is said and done she'll stretch out meow at me and get petted with a look up contentment on her face. She snuggles under my neck when I don't feel good and the nights I can't sleep I get to see Wonder Woman before work in the morning. It really is not taking things for granted.

I have not been hanging with my friends lately. They don't seem to understand until i spell it out for them which  I have no issue doing. But I also explain to them you don't see this side of me because I choose to let the brightness shine. God made me this way, I have wonderful friends to love me for me. He's put who I need in my life and I am more then grateful for everyone of them and there are days where I will stop and just say "Thank you God." Find the good in every day. Search for it. Find it. Embrace it.

Love Y'all
~Poppet

Update

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

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

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

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

Love Y'all
~Poppet

Lungs

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

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

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

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

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

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

Love Y'all
~Poppet

I hate social media

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

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

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

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

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

Love Y'all,
~Poppet

Health Care

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

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

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

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

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

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

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

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

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

I encourage you to help me get this out there

Love Y'all

~Poppet

Rare Disease

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

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

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

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

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

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

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

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

But I am gonna hop of here and enjoy my coffee

Love Y'all
Poppet