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