Set back or infection??

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

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

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

Love Y'all

~Poppet 

Go with the flow

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

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

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

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

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

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

Love Y'all
~Poppet 

Update

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

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

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

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

Love Y'all

~Poppet 

hope

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

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

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

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

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

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

Love Y'all
~Poppet 

Rare Disease Day

Since tomorrow is rare disease awareness day and my lungs are super uncomfy since we are trying to clear them I figured I'd update this blog about both of rare diseases. Most people see it as "just as a disease." Its so much more then just taking meds, and fighting insurance companies.

CF is a rare disease that affects every aspect of the body, its not just a lung disease, its a genetic mutation that alter the chloride/sodium channels in the body. On top that I have mast cell disease which triggers my POTS and multiple allergies. You can easily google what this disease is, so I am going to explain what its like being in my life and what you normally do not see when you google my disease.

Every morning before I even get my lovely cup of nice warm coffee I have to start an IV, start a nebulizer and put on a vest that rattles my chest to move the mucus. Take a handful of pills and an inhaler so I can get to the point of eating. Since I have been asleep and laying down most of the night, or propped up my secretions has settled and thought I have oxygen blowing thru my nose, my lungs are stiff, and I am coughing and trying to clear them. Sometimes if I am up and down all night this part of my day is a bit easier. I give Wonder Woman the 3 finger salute (hunger games) before she leaves for work and she sees that I am going to be OK for the time being. So I can do meds, eat breakfast, and do more air way clearance thru out the rest of my day.

Sometimes when breathings gets much harder I add some Benadryl and prednisone into this mix. Though my lungs are getting increasingly gross, its getting harder to eat, and my weight is showing just that. On doxi, for some reason I have to eat more freqeutntly and I do not get the luxury of microwave food so I am in the kitchen a lot.

Some days Wonder Woman comes home to early to help with my health, she even sits and watches my breathing patterns to see when and how we need to treat, whats the next step in plan?? She gets me talking so she can see if I am focused on my breathing and talk between breaths or if I am forming proper sentences. She checks on me in the night to make sure I am still breathing, and how close Rubes the cat is to monitor me herself. If the power goes off, she's out of bed to swap me over to a tank before I get the chance to realize whats going on. Some days things seem so grim she cries by my bed because of how heart breaking it is to watch me struggle and fight.

To make things more complicated I am allergic to so much, we recently had to swap vegan milks again. I made an off mark in a contemplative way that Coconut is higher in cals then soy milk, which she informs this is a good (Wonder Woman that its) get some meat on my bones. We have to watch every food that I eat, is it safe?? What has it touched?? Who has touched it?? Benadryl is never enough for these reactions and since my heart is bad guess where we have to go?? Yep thats right.

Nothing more heart breaken then 2 worried parents that your close with, and the tears in their eyes.

But you know what else all this is?? A joy for life, a recognition that life is short and its meant to be enjoyed. Its getting to do what I love, because my focus is my health and while I am sitting here clearing my lungs I can be doing this and working on my cookbook. I have parents who are willing to hold my hand and tell my I got this. I have people that chose me over and over again and I am so thankful for that. I am thankful for the sleepless nights because in those moments I not only found out who loved me, but what I loved to do. I found a love for makeup, a passion for recipes, and true friends that will love in spite of a genetic disease and an allergic disease.

If you can learn one thing from its this: Follow your dreams, do what you love, its never to late to start and love so purely and unconditionally that no one will ever question it.

Love Y'all
~Poppet 

Hatter

When I was picking out the Mad Hatter tattoo I was  going for different and something not everyone has. So I ended up with him from the same as my JabberWock because its not something you see and we had already started my arm with a dark theme. Darkness into light and I found the quote that goes with the scene. Alice ask if this is impossible and Hatter says only if you believe it is.

My lung function is poor, my heart is a mess, and my bacteria is flared. All this has caught up with me. Between keeping my lungs clear, I am eating when I can. Which can even harder then normal because Doxi is harsh!! Its OK though we have been doing this for a long long long time now. Some days I get frustrated because things get sacrificed because my job is to care for myself first and then i make time for other things. And it seems impossible!! I was blessed to see the All Father after an appointment this week and he reminded me I am in a position where my main focus can and should be myself. Then whatever time I have left I can use to expand my knowledge and what ever moves myself.

Most days things seem impossible, they seem overwhelming, and I feel like the only thing that I am doing is clearing my lungs, doing meds, treatments, and eating. Where do I have time to do what i love?? Where do i have time to see the people i love?? All this is possible, the people you love will understand that you have to take care of yourself first. They will stop and let you take your meds, they will help you clear your lungs in the way you need to. The All Father has even used drums to help move my secretions.

A lot of the time life seems impossible and you want to run away from whatever is affecting you. However, the easiest way to conquer all this is to face it head on. Sometimes this means getting up earlier then what you want so you have the time to do what you need to do and what you want to do. You may need to take a bag of meds with you and rig an IV from a drum stand. Thats OK, the people that love you will help you fight "the impossible" the way Hatter helped Alice. It was in his own way but the same end came to play. They defeated the Jabberwocky and did something she truly believe impossible.

Don't be scared to fight with those who love you, and though it seems impossible when your willing to fight head on, you can indeed beat this battle to.

Love Y'all
~Poppet 

Oils

I am going to put a pause on the tattoo blogs for a moment and be thankful for essential oils. Frigga an the All Father got me essentials oils, one night I texted him while I was having an attack, and he asked what triggered which I don't even remember at this point but he contacted Frigga and they found this oil stick called Breathe, I use the oil itself in a diffuser which is going now. I love it I am always rubbing it on my chest or turning on my diffuser and it helps.

I use this thing called a flutter, you take a deep breath and blow into it and puts a positive pressure into the lungs and helps breaks up the junk inside of them to clear it out. Some days its a work out. I am currently doing it every 2 hours while awake, to help with the infection. We work 10 times harder while I am sick or it seems like it, in reality I do this most days. The thing usually leaves me breathless and dizzy. Now my lungs just hurt but I mean I do have an infection and I am making them work.

One day I had put the oil or vapor stick on my chest and went to leave my room and remember I needed to use my flutter so I used it and I cleared my lungs and had no dizziness. I didn't think much of it until the next time I used it with out. Of course I had my diffuser going but I was still breathless dizzy and just wanted to stop. Not an option though, we fight hard around here. The oils really do help!!

Yes I use this stuff WITH my meds. I am currently on a little bit of everything or so it seems. This is just a natural and approved by my medical team and assist in helping me feel better.

But I must go and finish clearing my lungs so I can eat and take more meds!!
Love Y'all
~Poppet