Tattoo blog again!!

Continuing with Tattoo blog!!

One of my first major tattoos was a fairy sitting on a  sugar skull. Its on my left hand its a complete representation of who I am. Me and Wonder Woman were eating pizza and I told her once I was completely disabled I would get my hand tattooed because for some crazy reason I NEEDED a hand tattoo. (Yes I want my right one done but my skin swells and I'm right handed). While we were figuring out what to get, I wanted something so visible to represent who I am and my life. So this is what we decided on.

Sugar skull represent the celebration of a passed loved ones life, its a holiday in the spanish community and most our indeed catholic (as am i). A lot of things I loved have been sacrificed along the way of my health slowly detearriating. No more roller coasters, concerts, long beach day, and once I was cleared for a water park I got a PICC. My health has still decreased over the years and a lot of my time is doing meds, treatments, cooking and exercise. Every now and then my parents get me out of the house for a non medical outing. I didn't want to mourn the life I lost which is totally OK. You are allowed to be said and grieve its a part of life, but I wanted to be thankful for the life I had and the memories I had made a long the years. I was so blessed to have had so many opportunities in my life. So a sugar skull it was. It actually has horns which I find hilarious to.

The fairy well I am super tiny, and my nickname is Tinker Bell and I love all things mythical. Tho I will tell you I am mermaid and I have all these lung issues because I am not meant to live on land. I always tells Wonder Woman I need wings so I can fly. Take the stress off my lungs so I can do things. I am also mischievous and always taking her things. (google fairies lol). She is also a little goth girl with purple wings and yes I was and would still be if money allowed to be the little goth girl. So she truly it a part of who I am.

While I did get that major piece I got Peter Criss' drum tattoo on my inner arm, he was the reason I became a drummer and he is also the guy I was named after. I am also a HUGE KISS fan, and tho Peter is not my favorite member he truly is my favorite drummer. He taught me do what you love with soul and passion. It will show thru in all you do. Listen to his solo work and you can feel his jazz roots come thru.

There are so many more tattoo's to go thru and will give you a huge insight to my life. But for now I need to sort thru recipes and decided on the ones I want.

Love Y'all
~Poppet

Tattoos

Awhile back I promised the All Father I would right down the stories of my tattoos. I have been putting it off for a year, I wasn't sure I entirely want something so deep to be put in the public eye. However this might allow people to see Tattoo's in different light.

Everyone of my tattoos has a story, thought this will probably be a two or more part blog so its not to long I wanted to share at least part of the story with you. My collection is ever growing but every tattoo has a representation of my life. I think I will start with my Jabberwocky. The tattoo I have wanted the longest and we are FINALLY working on. 

In the movie by Tim Burton, Alice is faced with the fact she will have to slay the Jabberwock, she constantly fights the idea that she is the one who has to "slay" the creature. She spends most of the movie denying its her and characters along the way in different ways tell her she is the one that will take on this role. In the end she comes out in her armor and list all the 6 impossible things she believes and that she truly can slay such a creature. 

I have always tell people that I will slay CF the way Alice slayed the creature. Somedays CF seems impossible to beat. It breaks you down, it leaves you breathless in tears and you just seems like no matter how hard you try its just not enough. You are forced to believe what seems impossible that this to you will overcome. You will beat this setback, you will beat this infection, you will beat this disease. You have it in you, you just have to find that belief inside you.

What is unique about this scene, which is tattooed on my upper arm, before you see alice show up in her armor, the characters that helped her a long the way are willing to battle for her. You see, you are not in this fight alone, though it seems like you are in this fight alone and it feels that way you are not.     I often say, you are not the only one that is living with your disease, it affects every person around you. People will cry with you, they will fight with, and they will celebrate your victories with you.

So I have a Jabberwocky that wraps my shoulder, because I can slay this disease. I also have the support characters because I do not fight this alone. I have such a dynamic team. I call y'all my warriors because thats what we are. We fight daily together. When I look at my arm, I smile. Why?? Because as you will find out, i have a little mouse with a bow in arrow ready to fight, I have a twisted rabbit to do whatever he needs to do, i have a smiling cat to remind to smile through the pain, and a hatter to remind myself I am just crazy enough to believe in the impossible and to keep my "muchness." Time in precious, do not let it slip away and remember to believe in the impossible.

Love Y'all

~Poppet

Heart Disease Month

Something I do not touch on much because its mainly my lungs that are a constant source of issues, today we are going to focus on the heart for several reasons. My heart has been messing up badly recently (heart rhythm issues as i touched on in the last blog), I can go into neurogenic heart failure, I have a whole in my heart, and I have heart disease on top of my POTS. Which affect my heart and kidneys.

As many of you know I have POTS, which is why I have my IV, and the reason I can go into neurogenic heart failure which I have been warned about and we do monitor. Why?? Because I have such bad lungs, the only way we can treat my POTS is Salt, Electrolyte Replacement, and Saline. I cannot take beta blockers, calcium channel blockers, or any other sort. I even have to be careful with EPI in emergency situations. When my heart does begin to fail, we've talked about something called digoxin which Wonder Woman is not happy about so we work really really really hard to maintain my health thru diet, exercise, and proper saline use. There is no "if or when" when it does come to my heart because its all uncertain. But its always nice to have a plan in place for worse case scenario.

The whole in my heart is congenital and NOT a worry as of yet. I can feel my heart gurgle at times which is the back was of my blood into the whole, we have had MRIs and echoes to keep an eye on it and until it becomes problematic we are pretty much leaving it alone because my lungs can't handle larges amount of stress.

I also have coronary artery disease. Because I have POTS, my heart rate rest around 110 on a good day. On days like today it is much much higher. My heart gets so high that my heart spasms a bit (not dangerous from what I know) and it hurts really really really bad. It can be crippling at times. But since we can only do so much with treatment. I am under a physician care who has worked with Wonder Woman and my orders?? Call her when things go wrong.

Does my POTS affect me with all my treatment?? Yes!! I had complications this morning that pushed back my breathing treatments because it was a necessity that I took care of my heart first. It does happen. Mostly when we have major storms. Today was more of exercising has caught up with me and I am working on finding a balance. Enough to keep my lungs clear so I do not put stress on my heart, but not to much to where I am going to bottom out my blood pressure.

When I say I walk a fine line of balance and I need keep a close eye on my body all this is why. My life is so much more then I have CF and my lungs are starting to go down hill.

Today I encourage every one of you to research POTS, and Heart Disease in general. 1 in 3 woman die from heart disease and our symptoms of a heart attack are different from a mans. Get awareness out there and rock that red and own it!!

Love Y'all
~Poppet

Silly heart

If you read the blog before this you know we are trying to work on my lungs. My lung function is low and we are trying to determine how much is damage, and how much can we fix. While we are trying to fix them we have to be conscious of my other diseases as well. What could I react to, and what can trigger my POTS. Because of my POTS, I actually have Coronary Artery Disease, and Dysrhythmias (off rhythm). 

Superman was trying me on an extended dose of steroids, at what is normally considered and low dose on most people but since I am so tiny and so under weight at this point is a decent dose for my body weight. Well we are not to sure why its happening but its messing with my heart. An ER doctor didn't truly understand or listen to me and gave me a really really high dose for a normal person of steroids so over all I have been on steroids for over a week. Which now my heart is starting to mess up a bit and we are pretty sure its affecting my sugar levels (going high) because it has in the past. I was out for a bit yesterday with Wonder Woman because we had an appointment and I needed some meds. My heart messed up quite a few times in the matter of just walking down an aisle. I told her what was going and she of course tried to take as much stress off my body as possible. 

When I got home a friend from out of state was supposed to come by but I was so exhausted and my heart was bothering me so bad I ended up falling asleep and I am so thankful she understands that my life is so incredibly unpredictable. She never holds it against me. She really truly is an angel. My heart breaks every time I fall asleep and miss a friend especially ones that are from out of town. 

I am working so hard to get into a routine when it comes to my health. I am trying to get my lung function up by even one percent because my lungs always go a step back wards in the summer. That has a LOT to do with my POTS to. Recently I have become more dependent on my saline, I try to get at least 10 minutes of exercise a day, I do several different types of PT, I have to cook, and now that my heart is driving me crazy, I have to be very conscious of how much my heart can handle. I feel like 80% of my day is clearing my lungs and going to appointments and making phone calls for appointments. 

Life in general can get quite complicated but when you have me in your life there will never be a dull moment.

Love Y'all

~Poppet 

Lung Update

My life is constantly full of uncertainty. I never know which end is up, or how my lungs are going to behave not just day to day but minute by minute. I can be find one moment and struggle the next. I sueccsefully made it to see Superman and my chest feels off, and like I have air trapping. Which I probably do, my PFTs always show that. I am constantly exhausted, and more then anything I want to just lay down but I need to update this, and I need to cook dinner. I am trying to wait for Wonder Woman to get home so I can talk to her about my lungs.

My lower lungs have no air movement. IF they do, its very very little and the normal breath sounds have diminished over the years. Its really here nor there, I do have lung disease. I have to go to special centers now. The meds I need I might not even qualify for, but we always hope for the best. If we don't get the lungs well my prognosis isn't that great. Its about what it is now, which we almost never talk about.

I once again need PFTs, I need a high risk CT scan (which I am still unsure what that truly means but know enough to know its not good), I need blood testing, I need to see how much damage is done, and I might just need to be sent off to a better location to get the help I truly need. Its a matter of life and death. I fight so hard every single day so I have more tomorrows, I do breathing treatments, I do chest PT SEVERAL times a day, I eat a very strict diet, I do oils, and salt lamps, and sometimes I still end up in the ER. I still end up on antibiotics, and I still have lost weight. I push my body so hard which its getting to the point I can no longer push  my lungs to the limit. I have to stop and listen to these silly lungs of mine and do what they say!! Which is odd coming from me. However, I need more tomorrows, I need time with my friends, I need time with my family, I need time for me.

This week has took everything out of me. I have been on so much beandryl I can't figure out which end is up, I am tired, and I am resting. A lot of people haven't heard from me, and I am sorry for that. My life is a LOT to take in even for me. There is so much uncertainty in my days, and theres such much uncertainty in my lungs. And I have even yelled at my heart to quit its crap and get back in rhythm.

The thing is no one knows where there life is going to end up, I am just so blessed I have such wonderful parents that help me make the best out of my life and love me unconditionally.

Love Y'all
~Poppet 

Food Allergies

I almost never right about my Mast Cell Activation Disease or my Food Allergies because we usually do a good job at avoiding my triggers. But this is not always the case, sometimes accidents do happen and though most people do not want to take the responsibility of such a complicated diet, others always go above and beyond.

When I come in contact with something I am allergic to, it causes a severe reaction that effects my airways. Hives I can live with I am always covered in hives but breathing issues is not something we tend let go. My airways are already compromised because of my CF, when we mix the 2 disease together things can go from bad to worse in the matter of minutes.

Most people see food allergies as avoiding your allergens but its so much more then that. You have to be cautious of everything you eat. EVERYTHING, you eat. Everything your food touches, everything other people could have touched with out washing their hands. I wash my hand a LOT, and though its part of my OCD, sometimes I think it helps save my life.

If you follow my social media or know me personally you know all this is a major part of my life, my life revolves around food and whats safe, whats clean, whose touched what, and I get panicked when I watch people touch my stuff with out my permission. For good reason to. I tend to talk about it a lot in person and I constantly watching people with food and how they handle it. Who reads labels and who doesn't. Its a constant limbo of safety.

This subject can be quite taboo, people don't believe they are real, people forget about them, or people just plain don't care. Its up to me and mine to protect me. This is also the easiest part of my life. This is the part that is so easily controlled if people would take the time to listen and be educated on the what a true food allergy and what to do when someone you know comes across one. And since I am still feeling quite poorly I am going to hop off here.

Love Y'all
~Poppet

Awareness matters

I have always said my health isn't the worst thing that could happen to me, its the people who do not understand or believe me is.

I don't hit on this topic much but I have food allergies. I ate something or touched something yesterday that put me into anaphylaxis. While someone laughed it off when I alerted them because Wonder Woman was not there, it was going from hives, to sunburned like skin, and I was frantically calling Wonder Woman while taking Benadryl. She was monitoring me, while we were deciding what to do, because I was talking my normal, and it quickly progressed to audible wheeze and my breathing was off. So we went in.

Just the site of me was a bit concerning so they immediately got me back and all that and we explained to them I have CF and poor lung function on top of an allergic reaction. So they treated me and I still had an awful wheeze and they started having me take deep breaths, and the nurse was not so nice to start with and the doctor did NOT listen to me.

And here's why I call her Wonder Woman, she's fluent in CF and Critical Care (which is a super power all in itself) she started doing manual Chest PT, told the ER nurse I can't take breath it was causing the fit, and we do Chest PT to move stuff. Anaphylaxis causes swelling in my airways and mucus had gotten stuck, which makes breathing seem impossible but she ever so calmly pounded my back where I needed moved the mucus, and explained in her teacher voice what chest PT is, why it is needed, and its the only thing that will help at this point and to tell me to deep breath. The nurse of course questioned her and explain this a multi daily thing. This is what we do, she left and let her take control of the situation. A sweet lady came in to help me up, and she knew CF and described how and why my body was doing what it is, and explained her history with CF. Turns out she was a paramedic and not a nurse!!

I eventually did get to come home, because we moved the mucus that was stuck and got rid of my wheeze and had the reaction under control enough to go home.

Heres why education is so important. One person in the entire ER new what CF was, new what needed to be done but there was so little she could to do for me. My nurse, and doctor did not know what CF is, which is OK we don't live in a CF area. But what isn't OK is not listening and not educating yourself on what CF is. We also explained Mast Cell Disease, it is then up to them to google and see what it is and educate themselves on the diversity of my disease. I am SO blessed to have Wonder Woman.

I was not giving my health and disease as a mistake. I was giving them for a reason, maybe it is to educate on the hows and whys of my disease. Maybe its to bring light to the chaos in my life, that I make seem not so bad. There is only so much I can do. Once I give you the information it is now your responsibility to google and understand what you can.

I have been on Benadryl ALL day. So off to Wonderland for me.
Love Yall
~Poppet