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

Life has been insane lately. I have been battling the lungs as I always do, and I have also been part time nurse. Which I was just put back into full time Chef postition today. lol I am a Chef but profession, though I just work out of my home I really have not had any time to truly cook recently. I have been sick or taking care of a post op patient. Then my lungs were pretty junkie this week more so then normal. I am sure I posted Rubes was monitoring my breathing the one night.

So today the person I have been helping looked at me and goes "i do not know how you do it." Well the reality is I had no choice but to deal. With that I had one of two options. Let it make me miserable or learn to accept it. So why be miserable?? It takes just as much time and energy as being happy. Now yes there are days I call Wonder Woman and even Batman and go I want it out, it hurts, it itches, I want it gone. Knowing me well enough they always remind me to take benadryl and go to bed lol. Tomorrow will come and enough benadryl will make it better.

But the reality is there is no choice in it, you learn to cope, you learn to get use to it. This is how I cope with my diseases, I put all my feelings and issues on here. I try not to sugar coat my life so people get the gist of what my life is really like at times. It's not a glamours life but it is my life. I do what I can with what I got. I also know God has given me what I can handle and in ways being chronically ill is a blessing. I have learned to appreciate the small stuff as have some people around me. They know how awesome it is for me when I paint my nails, paint my face, get out of the house, and travel. I can't travel as often as I like but I have with a nurse or well Wonder Woman though she counts as a nurse (sorry).

Not just my life but everyone's life can get tough. We just really have to take the time step back and ask God what are you trying to teach me. Cry it out, put on your red lipstick and favorite shoes (my happens to be boots) and just make the best of it. Hard as it can be its what we have to do. This can apply to my followers who are not Christian and are rolling you eyes at me if you have made it this far.

But I am gonna hop off here as I have a cat glaring from her perch

Love Yall
~Poppet

Rough Night

Last night was plain out awful. One of those nights I lay awake and curse that I was blessed (which in ways I was) with this crap of a disease. I got no sleep last night, I was in God awful can't sleep and nautious pain. My cat monitored my breathing type of night. No sleep at all take benadryl to function type of night. Yes it was that bad.

I felt bad for my poor cat who stayed by my side all night. I was up at 2am saw the snow and curesed that to. Bad weather always means I am going to have a roough time. But gosh I can not remember the last time I had that rough of a night. Then it was the first snow fall with out Dog Dog. Then I was broken hearted all over again. It hasn't been that long but gosh do i miss her. She loved the snow. Then I remember how much she taught me. We lead a similar life. Allergies and just love to be care free and have fun. Even when she got sick she wanted to be loved on and brought me toys. Off topic I know.

Last night was just awful and I spent most of the day on oxygen. I haven't eaten much either it just takes to much energy. I hate say that but I am just so tired, and so weak. I just want to collapse into me bed and call it a night. Weather will do this to you though. Dizzy, can't breathe, lungs are full, my BP is low... I woke up and called Wonder Woman just to vent. But.

Days like these or even long sleepless nights in pain, make me so greatful for the good days, the days of going to work and teaching, the days of cooking to my heart content, getting out of the house, doing my makeup, curling my hair. These are things that I am so thankful I can still do when i want to and my health allows. We need the bad days to truly appreciate the little thinsg in life. There is so much I wanted to do today. I wanted to paint my face, do my nails, wash my hair, and I really really want some fresh cookies. But today, I got out of bed. I ate and I am proud that I can still do that. Some people honestly can not. As much as I want to curl my hair, paint my nails or even my face there is always tomorrow. I am not going to be healthy, the bad days will one day be more frequent. So when I can finally sit down and paint my face I will make sure I can enjoy it that much more. Because we are truly blessed to be able to do something so small.

Till next time.
~Poppet

I can't say much of anything has been going on. Though I did try to help Wonder Woman make my bed.

I have a day bed, and its in a corner backed up against the wall, crawling and lifting things with a PICC line let alone my heart is a bit much. I have a tiny room with a lot of stuff. So she was doing the sheets and I was doing the pillows, half way thru my heart was racing, it had to be at least hitting 160, I was short of breath, felt completely out of it. It was a work out. I helped!! We made it. We also listened to classic 70s music. LOVED it. lol

Thats what POTS does. It makes the simplest of tasks seem like a full blown work out. Even if your helping someone out. Just putting a pillow in a case it was just way to much. But we got it done and then I lost my heating pad. Its a puppy that you microwave. I just found it after a couple days and it was under my purse in my chair. WHERE IT NEVER IS. I put it up so I wouldn't lose it. What did I do?? Lose it!!

Nothing else has really been going on. I just need to make a lot of phone calls. So I guess I best keep this short and call them while business hours are still open.

Love Y'all
~Poppet