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

Voice as a patient

I was talking to someone lately and conversation of having a voice in a medical situation came up and speaking up for yourself in general. Though I am very outspoken and question every decision that has been made medically for me (because I am related to ICU nurse) I do not always have a voice in certain situations. I am not sure if I have touched on this before but I have a medical and durable power of attorney. There were quite a few reasons that played into this but I will not be putting them out there.

Basically what a "power of attorney" is, when I am sick, incoherent, or if one day I am on a vent and can not speak for myself I have a legally fave 3 people the power to speak and sign for me on my behalf. I have such a complex disease that effects my lungs and heart that I have no idea what can happen to me. Though I recommend this for everyone because life is just uncertain. I have personally been so sick and so out of this I have allowed one of them to sign for me on a few occasion and I have let that person make decisions for me.

When the only thing your doing is focusing on breathing you do not have the ability to sometimes form sentences the make sense. Three or four words here and there, the thing is it takes oxygen in the lungs to be able to talk. You can't breathe you can't talk its just how it works. I have been so strung out on meds that have been medically necessary that I was hallucinating and I need someone to guide me on the right decision for me. I have had lung infections so bad I could barely keep my eye open I was just so exhausted from breathing, I have been in anaphylaxis fighting for my life and able to sign for me because my job is to survive.

What I am trying to say is this. Just because someone comes off as strong an independent does not mean they do not need someone there to help them and be a voice when all you can do is fight to breathe. Fight to just survive one more day. The people on my power of attorneys chose me, they were not going to let me fight this a lone and one is a nurse that has proven that my medical needs out way their personal needs. They have been in my life for years, and when we were starting to face the uncertainty of where my health was going we start to form our team to help me get thru this.

When I came out with the news of how poor my lungs are I had a few people stop me and go "whatever you need I am here." They would not allow me to be stubborn and fight this alone, they told me that no matter what they will be apart of my team and we will fight this together. I sat down with 3 of them a few years ago and expressed my concerns and needs how hard we have to fight and they were the ones that are listed to call. They are my people and they know how much I love and need them.

If you are not around me all the time you don't see how my health has taking a toll, how hard I fight and just work to breath. Wonder Woman had to take an old macbook pro out of my hands because I couldn't carry it and breath at the same time, I had to sit in the back at mass so if I need to go the toddlers run area to breathe I could. You don't see me laying in bed trying to get thru yet another attack to just make it and breathe. You see the girl with a smile on her face, playing with makeup and in the kitchen cooking. Telling you "I got this." And I do!! Why?? Because people have selflessly helped me thru everything, they have held my hand, and talked me thru whatever it was I have needed. They have taught me above all kindness and love is what matters. And we as a team no matter how diverse can do this together.

Love Y'all
~Poppet 

Essential Oils

Disclaimer: Before you use any oil consult your doctor.

Right before Christmas, I had a nasty lung infection and the normal meds weren't working and my infection was slowly progressing. I was a bit frustrated because I wanted to finish my tattoo!! Yes priorities. So I called Sups back and I got a stronger antibiotic and if it doesn't work emergency appointments because it was getting a bit serious with my really low lung function. I of course texted the All Father and he contacted Frigga and they figured out some oils for me. They got them to me and I think this was the same day I had started my antibiotics and I noticed a difference. I could move the junk in my lungs!! I had been using it for a couple of weeks a few times day and they smell lovely and more importantly they work. Wonder Woman was skeptical up until a point where I was in limbo of a bad attack and nothing was helping.

The night of a bad attack, I had eating something loosened up the junk in my lungs and I couldn't catch my breath and for a few minutes I had an audible wheeze, and I couldn't get a breath out. Not an allergic reaction just CF, I did a bunch of treatments, took a bunch of other meds and nothing was easing my breathing. I finally went to me room and turned my oils on, my salt lamp on and my breathing finally eased. This happened over the process of an hour or two. A few days later at the most I had another questionable day where I was just a bit chesty nothing serious at that point in time and I ended up bringing my diffuser down the hall sitting it on her desk, she told me not to wait treat while its treatable at home.

And today?? Its snowing my lungs are awful and she has sent me to my room to do my oils. There is something to these oils. Lets be clear, they are good oils, from someone I trust. Some oils are diluted down and to pure these are pure oils. It has not improved my lung function and it probably will not. However it does relieve my symptoms, it does open up my airways, and it gives me much need relief and has probably kept me out of the ER one nite.

I use the oils under medical supervision and I also use them my regular meds. I do not skip doses and I continue to use my rescue meds as needed. Which I find very lovely. I have such a dynamic team and I am so blessed to have them!! I think we converted a science based person that natural things can help.

Since its snowy and I am feeling it I am gonna hop off here.
Love Y'all
~Poppet