Spring!!

Somedays I feel like nothing goes on but everything goes on at the same time. Lately I have been crazy busy and I swear alls I am doing is running around which I am ok with. It is physically draining and on top of that it is pollen season. Which is no good for me at all. I come home take my cocktail of lung meds so I can breathe. Superman told me a long time ago that Spring I would need steroids every time I go out. He was NOT wrong. I always forget to cover my face until it is to late. WHOOPS. lol and we are so use to cold weather you cover your face but we are not completely use to spring cover your face. Why?? I am not sure at all. But spring has been really rough on me this year.

But I am trying to not let it stop me, which is a bit hard at times especially when I come home and have to drug myself on prednisone and benadryl and i knock myself out. Then thanks MCAD I wake up the next day in a prickly rash. Of course allergies means more mucus production which means my lungs are overly junkie. Which is never good but it's something I can work with. But some how I manage.

Other wise there really isn't anything going on. I am trying to find a cardigan long enough to cover a PICC dressing so I don't have to wear a PICC cover. It's hard to wear dress clothes and make them look nice when you have a PICC cover on. I can make a nicer one but it will almost not be worn. But thats OK this a mission I can enlist Wonder Woman for. Some one told me to let her go to Wal Mart for me and pick a sweater for me and i am like oh no!! NO NO NO. Then I was like she bought me the dress as surprise and its PERFECT and she helps pic out my tattoos so why not trust her with an accessory. I said go for it lol. Find me one and I will wear it.

But I guess I should get off here for now I am suppose to get things done today.
Love Y'all
~Poppet

small update

I am sure if you have been following what has been going on with my will. Well it is signed and paid for thanks to a wonderful Lawyer and her staff. They made this experience very easy and non emotional. By emotional I mean, I had to make a decision to get a will so that I can protect Wonder Woman from unnamed people. She says its to protect me from "him." But at the end of the day she will be the one that could possibly deal with him. It is in hand and all people involved know all the details of it.

This whole process can get depressing. I mean my health is going down hill and I had to think about who I want to have what, where do I want money to go to, who do I trust enough to make sure my last wishes are going to be followed. How do explain to the people you love dearly that this is what I want just in case but our goal is to keep me alive. Help me fight another day. But please don't let "xyz" happen. It is the most depressing thing but most relieving thing I have done. There is one more thing I have to do but it's not something I can post on here but know it is being done.

All this made me realize one thing.

My warriors are the strongest and most supportive group I could ever have. They assure me when I need it, they let my cry when I need it, and most of all they are just there. They take time to make sure I am OK, they make sure that someone is always there for me. They have no conditions behind this just the fact that they love me with all their heart. They deserve the entire world and more. I am going to do everything in my power to make them proud to stand by my side. I am going to leave them an awesome legacy to keep going just because they deserve it and I know we together can change the world. We as a group can make this a better place.

But I must get off here I need to dye my hair the All Father is expecting pics today.
Love Y'all
~Poppet

Smokers

Smoking!! My up most pet peeve. Smoking.

Shocking right?? Someone with lung disease anti-smoking?? Who would have ever thought. But seriously...

If you want to smoke in your own home or away from doorways I do not care. But know you SMELL like cigarettes. I can not tell you how many people walk by me and I have a horrid attack because of the smell. Which can be bad!! But not as bad as direct inhalation of smoke.

I have only had ONE seriously bad reaction to someone walking by, I have no idea what happened but my air ways shut down, my throat got tight, and I could NOT catch my breath on oxygen. I was grabbing for all my meds all at once in the middle of the grocery store. Drinking some benadryl, taking a few pills, and using my inhalers. Wonder Woman close making sure I have everything and I am breathing. Now, I usually do not react this way, just a mild cough and airway constriction. But that time is was HORRID.

Well lets talk about what happens when I breath in that stuff when someone is careless where they smoke. Yes I am clearly upset about this. Yesterday, I walked past one person smoking and into another. As soon as Wonder Woman does what she does best. Smokers, benadryl, inhalers now. Lets me get out of the road. (i ran into one avoiding the other) So I take it, I feel no releif so once I got to sit down I take some more. I keep assuring her I was OK. I mean I am oxygen and taking everything, but when I walked out MORE smoke. I get in the truck as fast as I can, stupid skirts I half to wear because I finally got my Christmas tattoo. So here we go. Take some more meds, take some more albuterol, and I think I am fine. WRONG!! Oh I was so wrong. By the time I got home, you could hear me across the room breathing I was struggling to get air into my arms, let alone out. (It's hard to get stuff out when mucus is blocking my airways.) I got a breathing treatment in, I got mucolytics in, I got on my machine, and MORE benadryl and steroids. Though I am doing better, I am still on oxygen. I am struggling but not as severe.

Two people decided to smoke in public and because of them I am sick. Yes this was directly related. It sounds harsh but this is reality for not just me, but people with lung disease and other diseases. This is what people have to think about when they go out. We can not be care free. We have to be extra cautious about it. I have to watch every single surrounding as does Wonder Woman. It gets to the point its almost impossible to get out. This happens everywhere!!

Now if you read this far, and your offended, this is my reality. I am not asking you to not smoke, I am asking you to do it away from  door way and do NOT exhale into the stores (that has happened to me to).

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

I know I have been MIA for a bit. And, I have not been updating as I usually do. There has been a lot going on but it always seems as if there's nothing interesting enough to update about. There no new update with my lungs, we are still as is. Crappy lungs, and chronic antibiotics. I have either really bad peak flows or decent ones. My POTS has been giving me a lot of issues lately which it normally leaves me be. But my heart has been as mess. My BP has been low, and I have been so dependent on IVs and salt. Not to mention antibiotics and Benadryl.

But the good news??

I have taught twice this month, and I also have another position now. To get out awareness on proper nutrition and disease. I know many people with POTS especially hate to hear "well if you ate better." I am living proof you eat better, you have a better quality of life. Am I still on my saline?? YES. I use it daily. BUT, with proper nutrition, and cutting out meat and gluten, my health is normally under control. My heart is in a decent rhythm. I am still tachicardic but its bearable. I don't bloat terribly, and I am not in a lot of stomach pain. I also can disconnect more, and do a bit more with out my heart just given out on me.

Food and nutrition also plays a huge part in CF as well. Certain foods cause mucus production, some our hard to break down even with enzymes, we are normally malnourished, and I have learned to balance that as well. It's been a long hard journey but with dedication we can make it.

That's all that really has been going on lately. Which I think its time for coffee :-)

Love Y'all
~Poppet

Raised by a nurse

Being raised by a nurse, life has been interesting. Its a wonderfully awful thing. It has its blessings but sometimes I hate it because I can NOT get away with anything. Not the point of this blog but this.

I read an article to her recently that stated nurses want patients to have quality not quantity of life. And she agreed. I kinda look at her and so thats why you let me do what you let me do. She was beyond confused at this point. I tell her, I have more makeup that I could ever use, I love my tattoo's that I can barely get out and show off, my hair is teal, and I save every penny to get them and stuff by my favorite designer. This is what makes ME happy. I love classy but edgy clothes, i love tattoos, and i love love LOVE makeup. It is how I cope with my disease. She finally knew what I meant by that statement.

She has never onced talk to me about living a really long life into old age. But to live each day doing what I love, doing what makes me happy. She lets me express myself in ways that make me comfortable in my skin and not what pleases the masses. She defends me in what I love as long as it hurts no one. Yes, she does everything in her power to keep me happy but she never once pushed to do something I was not happy with. She lets me danced my own band and pushes to follow my dream no matter what it is.

So you know what?? I am truly blessed beyond measures to be raised by a nurse that truly knows what it means to live, not just to survive. For that, I am forever grateful!!

Love you Wonder Woman!!

Love,
~Poppet

Update

Sorry I've been MIA on here life has been a bit hectic for me. I have a constant lung infection that is not going anywhere, so I have this crazy med regimen now, which most days I have not been feeling so hot. I just fight to do the simplest of things. But as alway I manage to make it.

My lungs?? Well they are clearly a bunch of crap. I mean they stay infected, some days I struggle just to wash my hair, I have this awful wheeze, and my lungs just hurt so bad, then my heart messes up on me and then I get chest pain. If I get to much pressure in my lungs they grind against my chest cavity wall which is just horrid, and then my heart does this spasm thing. I struggle to eat, or cook for that matter. It's just been insane.

THEN, I have been having allergic reactions to nothing. I will break out in hives for no reason, flush out and need meds. It will be out of no where so I have been battling that as well and benadryl has been a constant in my life. All that benadryl means my life drags behind. I just want to sleep, or I just sit in my chair and watch movies with Wonder Woman.

I also been working on my will, and getting all that sorted out, I think it's funny Wonder Woman encouraged me to do this and all this drama in my life is happening. It feels like my life is falling apart. But I assure it is not. I got this, and I have the best medical team and I will get thru this like always.

I just wanted to update you and not let anyone worry to much about me haha, I am quite uncomfortable at the moment so I am going to hop off here and do all my meds.

Love Y'all,
~Poppet

A bit depressing but reality

As y'all know I write about my life, the not so glamorous and down right depressing at times. This happens to be one of those post. The brutal honesty of what someone goes thru.

Recently I was getting my health insurance all set up to get some extra help as my health is quite expensive. She has been a huge blessing to me and such a kind person. But me and Wonder Woman got to talking and advanced directives. Which means if anything ever happens to me the people names in this legal document make decisions for me. So this means you have to find someone you trust with EVERYTHING. And know you well enough to know what you want. So this takes a lot of trust. I had spent the last couple days contacting people.

So I sent out a text to some people very dare to me, and explained what I was up to, and if I could use there name. They said yes and asked me if I was ok. I said yes, though I do have a lung infection still I am OK, sent a pic for proof lol, and explained my situation. I am not going to go into details but there is someone in my life that has not been around for 10 years and though he is related to me I do not want or need him to make medical decisions and under minding some one else. OK this sounds quite confusing because I am leaving out peoples names to do privacy and respect.

If I am ever one a resperator I want the chance to fight like hell, I want that chance to prove I can over come the odds and fight for a lung transplant. But I also do not want to live on one for the rest of my life. Though these people want to keep me around they won't let me live a life of vegetation. See I told you depressing. But again fact of my life. You can be on a respirator for months and be ok. You just need to be sedated so your lungs can heal, which I told them both if this is the case, and transplant comes up take it!! Give me the new lungs, give me that chance to have a new life. They both agree.

I am so trying not cry typing this, because it is heart wrenching. It is terrifying. I also feel so guilty putting people thru this. I feel so guilty telling people that a relative even though its been 10 years since the contacted me have no "hereditary rights." Who wants to hear this. Especially the people I contacted. I am in my late 20s. So for me to send these text and plan all this is even more heart wrenching then I intend it to be.

The fact of living with a disease especially one that can slowly kill you, sorry to be blunt. Is the fact you have to make these decisions. My lung infections are getting more frequent especially in the winter. This infection started because I spent 12 hours at the hospital waiting for someone to have surgery. That's it. I don't mean to upset or scare anyone. But if you made it this far and you are sick. You are not alone. In the words of someone I love: "You are making the right decision and are smart to do this." You have to protect yourself. You have to make sure you and the other people have your best interesting in mind. And agree to make your wishes just. Make sure the lawyer you are speaking with knows your wishes as well.

To the people that are allowing to use your names, so I can get this worked up. Thank you for having my best interest in mind. And though this is heart breaking for me to, it means the world to me. I love you both.

Love Y'all
~Poppet