Birthday

Tomorrow I turn 31. I wasn't even supposed to see 28 but I refuse to stop fighting, I refuse to quit pushing to stay off transplant list and keep my own lungs even though some days are super tough. Why?? Because of days like today.

This morning I woke up early, got coffee going, did my treatments, and started my morning routine, today was the day Frigga and the All Father were taking me to the beach. I had the options of two different places and I chose the place I first got to spend the day with Frigga. Maybe its because it was a wonderful memory or maybe it was because I need the refresh on my soul. You see the place I went which is by the ocean is a spiritual center. Its not like formed religion. We went stopped by the front desk and the one person saw my chest and asked if I had surgery I smiled and explained no no this is my IV and I have cystic fibrosis and she immedately wanted to help. She talked to us, and I explained how Frigga had helped me over the past couple of years with different homeopathic things. So we went upstairs to meditate. Meditation is one of the things I have learned to center my self and spirit. After a mediation with 2 of my favorite people over looking over the ocean. We went to the beach.

I put my feet in salty water while I breathe in the salty air to break up the junk in my lungs. I chased a crab the size of my hand and put and itsy bitsy shell in my bag. I breathe and coughed and I got re center my soul. This past year hasn't been easy, in fact the last couple of months I would like at the All Father and asked for the ocean to reset my soul. I needed to breathe in the ocean where my heart belongs, where my soul belongs, and just reset myself. They got a pic of the moment the cold ocean water hit my feet. I got to breathe in all this ocean air and I was just at peace. That moment was peaceful and I was with people I loved.

After that we googled and googled and found a safe place to eat. It was this safe sweet little place and I got to eat this beautifully plated salad and they were wonderful with my food allergies and they were all so so kind. I was so appreciative of every one that surrounded. The sweet lady who talked to the kitchen, and the people who altered there meal to eat with me. That is love and thats why I fight for this life. Because of days like today,

Be present and just love.

Love Yall
~Poppet 

What you think, you create

Guilt, it comes a lot when dealing with a chronic illness, it can be quite an overwhelming feeling. It can come a lot when your dealing with this weird world. You feel like your a burden to those you love. But what if for a minute we just took a moment to step back and just say "I accept that I am feeling this but I choose gratitude."

A lot has hit at once, Rubes' granuloma is back so we need to get her treated, my birthday is coming up, and with the rain my lungs are in a very bad spot where I am spending a lot of time just trying to catch my breath. I take all these meds that make me quite emotional and my poor friend who talks to me the most gets the blunt end of it. The All Father and Frigga my spiritual guides thru this life always remind me, what we think we create. Sometimes it means just simply accepting that you feel this negative emotion but not act on it. Its so easy to just let those feelings eat you up and just break down but its a whole different world to accept your emotions and step back. For me its taking a deep breath and put my head in my blanket and just letting go. And the reminding myself that I have a choice.

The amount of energy and support in many different ways that goes into keeping someone with a terrible illness a live can make you feel like a burden. We've all been there, and its OK to cry and express this. After that take a moment to say what you are thankful for. Though its different for all of us, I can easily say I am thankful for my incredible support team and the sacrifices they CHOOSE to make to see me live the life I want. You see they also have a choice in this. They make a choice to stand by us even though it could be the hardest thing they ever did but their love surpass that. They love us enough to carry that weight, and thats such a blessing to have someone love you enough to take on that roll.

Frigga one day introduced me to Mala Bracelets and mantras. They are a form of meditation and we can speak these words into each bead (108) and that energy you create is in those beads, and its such a good reminder every time you wear it that you spoke those words. My persoanlly is "I love. I accept, I forgive. I am present." Those for words truly help me when me emotions (steroids) get the best of me.

Love has centered me many times over, whether its a simple text, or someonebringing me coffee in bed so I can have a moment before I start the rough morning of IVs and clearing the lungs. I accept that this is the life I was giving, I accept that I was giving these people to guide me, I accept the emotions that come when I least expect it and its truly ok to feel that way. I forgive. Forgiveness is such a powerful thing. I forgive myself for beating me up and tearing me down, I forgive people who dont understand, I forgive moments of frustration. And I am present. I am alive, I am breathing, and whatever I am doing, wherever I am at, who ever I am with, I am present in that moment.  The phone can wait, technology can wait and that current moment is where I need to be.

Many times over this has helped center me and remind that guilt is a very real emotion that can come up, I have the choice to act on it. Yes sometimes I do, but then I remind myself I have such a beautiful and wonderful life. I am so loved, and I love back. Thats truly makes this life worth it.

Love Y'all
~Poppet 

Food Allergy Awareness Week

Two post back to back?? What is this?? Well I have no idea what my week is going to look like so I figured I'd just go ahead and post this.

On top of everything else I deal with, food allergies is just one of the minor things, because this is something I typically have control of. On top of that I am a Chef and I am fully in control of what I cook but this does not mean accidents do not happen, and an accident almost took my life. I have no idea what happened that day to cause such a severe reaction but I remember a few things of that night. Like Wonder Woman crying in a corner because she though that was the last night with me.

Whats horrid about all this is that moment could have been prevented. That reaction happened in my house. It happened with my pots and pan. And I have eaten the entire meal since. Something touched my cooking equipment. Cross Contamination is a very serious thing with in the community and its something thats over looked. It happened in my own home. This is when my OCD got bad. We redid my entire kitchen (im not mad at this I now have a Caphlon set). Im very selective of who touches my food, who works with my food, and who I eat out with. Why?? I actually had a barista look at my weight and give me a mocha because she though I truly wanted that mocha over what I had ordered. This was on a mothers day as well. Can y'all take a moment to realize what Wonder Woman goes thru?? Yes a prayer for her cause lord knows she needs it. I have the mind set of nothing can stop me this is my life and all the things that have tried to kill me??

Food Allergies are just a minor part of my life, but they can kill me quicker then my CF. I have spent count less hours advocating for myself and the food allergy community, on a medical level and a personal level. I taught nurse students the importance of all this and explain the day I almost died in detail to them so they truly understand how this affects people. I also had a Chef come to me in the ICU and just throw down his credentials and its like really?? Im a Chef to now what are we gonna do to fix this situation?? I dont ever remember anything happening about all this but my soul goal in life is to make hospitals a safe place for people with food allergies because I assure you it is not. If you read my last post already one of the many reasons I want new lungs.

Most allergic reaction are preventable, and a lot of the times people die because we are hesitant to react. Whether its denial or lack of knowledge. Both can be fixed ands its up to us to fix it. If you so much as suspect your reacting to something do not hesitate to treat it. Do not hesitate to go in. Advocate for your friends, be a voice when they are quiet and shy. Explain in detail what the allergies are, and if you ever second guess if your food is safe, do not eat it. Your life matters, you matter. Always take it seriously when someone says they have a food allergy, do not try to trigger it. You can take someones life.

Its been a week of celebrating our nurses, bringing awareness to CF, and food allergies. Go a hug a nurse and thank for the selfless act of love they give to us.

Love Yall
~Poppet 

:-)

Its Cystic Fibrosis awareness month, and this disease dominates my life. I mean its to the point I get on Skype and no one thinks twice about the coughing and clearing until it gets into full on coughing fits. Its also just doing neb treatments mid games. Yes I play a lot of video games, its an escape from the seriousness of my life.

What no one ever really see's is the contest fight to stay out of the hospital, the hours of treatments and ll the chest PT that comes with this not to mention a lot of pills. My lungs are not in a great place at we our constantly monitoring them. Superman predicted 32 as the age my lungs will need swapped out and sadly we are right on track. No one ever wants to here that but this is just part of my reality. Though I dont let this stop me, I refuse to allow that age to be a deadline of sorts. It was almost as if I was accepting a challenge to prove him wrong. Not long after I was told this and the topic of transplant came up, a good friend of the families told me, when you come to this road make sure your reason to live with is not so your family does not feel loss, dont do this for your family. Find a reason to do it for you.

So my journey started, a journey of self love, and what I am truly fighting for. Some days its trivial. Like um its ranked season I cant be in the hospital. To I want change. I go in to the hospital and met with "cant your parents bring you something to eat your diet is complicated." I get treated as if I know nothing about my disease and my life until Wonder Woman pops in and there like oh!! Now we get it. I want to be a published Chef (working on this) and I want fully master yoga and Qi Gong. I want this to be allowed in hospitals. I want people to understand the importance of meditation, and how all this has helped me improve my health.

Every single morning you will find me with my oxygen on in the sunroom doing yoga, or well fighting a Rubes for my yoga mat so I can do yoga. You see me cooking dinner practicing Qi Gong which helps me focus on my breathing. You see Cystic Fibrosis isn't just I need to clear my lungs. Its I need to get oxygen in them, I need to eat a healthy high calorie low fat meal, I need to keep my body strong and healthy so when the time comes I can accept my new lungs into my life. Yes most days I cant stop coughing but I still try. I will never allow CF to be a reason I stop. Its just not a good enough excuse to put my life on pause. Its the reason I keep pushing forward. Its the reason I am who I am.

While I am working on keeping my body at top shape, I also need to keep my mind clear and focused. Some days its hard. You see my past post with the tears because I do not always feel strong. But its absolutely OK to cry, as long as your not giving up. This disease can take a toll, it can be a heart breaking experience but its also a blessing is disguise. It has taught me so much about life, and how precious time is. It tough me that sometimes the best thing you can do is lay on your yoga mat with a kitten and just love her. Be present, be open, and just love. Life is way to short for anything else.

Love Y'all
~Poppet

Laser

So this week as I stated in the last post, I was lent a laser that my friend swears by (I am leaving her anonymous because I do not know how much she wants me to put out there)  but everything I drink is lasered, and most food and meds I take are lasered to. And though I have plaid with one of these before and new going in what they could do I didn't expect this to be so powerful.

I followed her directions of use with and then I got put on a few harsh medications. Some that leave my exhausted and lying in bed unable to move from share side effects, let alone the awful side effects of prednisone. Though it has gotten the best of me, and I have been asked several times if im ok because im just trying to keep it together this round hasn't been all that bad. I say this knowing all this could lead to an admittance if my PFs dont budge.

So as I sit here not feeling as bad as I should, and my strong team behind me, as we are trying to figure out if we have, damage, swelling, or infection. I am working incredibly hard to stay home for the most trivial reasons. I also have a tattoo to care for, so I began the journey of lasering everything. Not only did I spill it everywhere I began to notice a positive difference in how my body is handling this round of stress.

My tattoo is still in the ouchie dont touch it healing stage, still a bit swelled, my pants dont fit (is this what normal people feel like??) and its already starting to peel which is amazing, very few tattoos have I ever had heal this fast, I do not have the crippling side effects of doxi, a lot of the issues with my steroids aren't terrible, and I really just dont feel all that sick. But here I am fighting numbers and being defined by them, which I have a feeling thats what life is about. Numbers.

Also Rubes the Cat has been getting a bit of treatment with the laser to, not as much as me, but her anxiety seems to be ok and her hair is growing back in. If you dont know she ripped out all of her hair when I got an iron infusion because I was sitting here on my bed fighting for air in my lungs. So all in all a good improvement.

Just a quick laser update for now,
Love Y'all
~Poppet 

Lungs

Someone in this house has been sick, and I called Superman who never got the message so I figured eh didn't need the meds, turns out he didn't get the message and I had a scheduled appointment anyways so I just waited to see him and even got my tattoo in a location my pants wouldn't bother it, thinking I was prepared. Then I got hit with my very harsh reality. Just because I what I consider OK, doesn't mean I am.

I felt well enough to get my tattoo, I even made plans for this weekend, but the reality living with this disease is my life isn't always what it seems. My numbers are bad, by bad means I have 2 more days to feel better or well for my numbers to improve and they havent budged, everything is low, my oxygen is on four, and im fighting to stay home. And at this point I am not sure if it'll happen, im an exhausted mess, I am on a ton of meds, and I am doing homeopathic work as well. Thats rights one does not out way the other, they both have an equal purpose in my life.

You guessed it my reality is I have a lung infection, my reality is its really hard to fight off this infection because of my immune system and alls I want to do is sit and cry, just stare at the screen and cry, but thats not a good option either. Its just so frustrating to know that I feel ok but the reality is deep inside of my body theres a war raging in my lungs and they are currently winning. I cant have this be my last major infection. I cant have this be my "we need new lungs" I just need everything to work out. But the reality all of this is out of my control. I am doing everything I need to be and should be doing. Thats all I can do.

I often will tell you CF isn't the worse thing that can happen to me, and I truly believe that, its people who dont listen to me, and dont act that are the worse thing. No I am not blaming this on anyone, its simply my body that can't fight off infection. Something as little as someone having a cold in the same proximity as me can cause all of this. What someones body can fight off mine can't. This is just the body I was giving. As much as we fight to keep my lungs under control, the progression of my disease is going to happen. No one wants to hear that but thats the unfortunate reality of my life. So we embrace it, we accept it, and we make the best of what we can.

But I guess its time for more coffee and to catch up on this Anime
Love Y'all
~Poppet 

Organ Donation

Its organ donation awareness month, and this is a subject very close to my heart for many reasons. I am the daughter of a transplant nurse. So growing up it was just something you did. Theres no "what?? people do that??" It was "we dont need organs in heaven someone her can keep them." At that age I was to young to comprehend what all this meant. I just new when you died someone else got your organs. As I gotten older, got diagnose with CF, and found out my harsh reality that it became so apparent why those magnetic were on our fridge. Someone was fighting to hold long enough to get that miracle of a second chance at life. Then I came to realize what a taboo subject this way.

People dont openly talk about death, we are so ready to praise the fact that someone is born but when it comes to the latter we are supposed to quiet about it. Leave it be. The its a sad heart wrenching subject its still very real and we need to express our concerns now. Does your family know you want to be one?? Do they know you are one?? Do you know myth vs facts?? Do you know why that little heart is on your drivers license??

When I was 27/28 we thought this it, we need to get listed, but we got a new meds and we bounced me back with a life expectancy of of 32. Based on my numbers thats would be limit my lungs could handle. We might need to talk about this all over again. Then I did what I needed to do, I got a living will, and power to attorney, and got things sorted. Wonder Woman asked if there was anything I wanted, I kinda look at her and was like I want to meet Steven Tyler, I have been in love with this man before I even know who Aerosmith was (a movie I saw them in) though that was an impossible feet for her, I told her I wanted a sleeve and we set to work, I knocked out my sleeve, I got a part lower arm one, and got tattooed with my BFF. As my lungs are steadily going down hill I asked for one last trip, thats all.

You see growing up with a nurse such as a transplant one, she never let me believe there was always tomorrow to get things done. We are in the here and the now. Thats it. We embrace today, we strive for things we want. As my lungs grow weaker and we are needing more PFTs the thought of what I want is so much more simple. I want to live. I want to survive this life and change this world like I always said I was going to do. Do I want to see the world?? Of course. But what I want more then anything is to live.

If more people were organ donors, if organ donors were just a common thing, we might just be able to see more people live. Its not a cure, its not even a fitx, its not a guarantee, but its chance that I can have a life. Its a chance that I can be a full time pup sitter for the best All Father in the entire world and I can travel and see who I want to and be with who I want to.

So often I ask, if it was your loved one struggling to fight off end stage disease, and watch them struggle, what would you do?? Would you be a donor?? Would you fight for them?? Would you spread awareness?? Thats we do, and I promised poison Ivey that she wouldn't live life with out me and thats something I work daily at. Surviving. Not living just surviving.

Please sign up to be a donor, its very simple. You can do it thru the DMV, and im sure donatelife.org has some information to.

Love Yall
~Poppet