:-)

Sorry I have not been posting a lot lately, iron makes me horridly sick and Dog Dog my sweet girl is a bit sick and she's getting me first before anything else. Being that I am allergic to her asthma wise I usually sit outside with her after treatment or before. She's the best dog a girl could ask for and emotions and MCAD is not the best thing in the world. I get hives from it but thats OK. She's worth it.

Not really much to update on though I just wanted y'all to know things are going decently besides iron side effects. Which I get more this week which is just as bad and been preparing for that. Which means I have been trying to eat what I can. And prepare myself to be on oxygen and benadryl for a bit lol

Sorry this is so short, i need to get some more things done and hopefully give you a better update soon.

Love Y'all
~Poppet

Iron

Sorry I have been MIA on here recently. This week has been interesting and eventful, not in the good way either. 

Lets start with the mild reaction I had to what I think was a bug bite. I was getting ready to run errands the day before my iron infusion. I got bit by something and not long later I was taking some benadryl. I sent a pic of my makeup to Sif who looked at and thought I had a reaction which she wasn't wrong I hadn't told her at the point and she called it lol. Makeup looked AWESOME though, no idea how I managed on benadryl but thats ok. That night I had my hair done to, well cut and came home to get ready for the next day.

Which was iron day, thankful I handled it well during, no adverse reaction and chatted with a lovely Scottish couple. It made me want new lungs so bad even though I am still functional so I can go to England and (she had told stories of London) see a good friend of mine, go see all these awesome sight and finally get to hang out with my lovely Pixie Momma. I met so many lovely people and got to meet so many inspirational people. These are people that fight cancer, though some will be cured, its still a tough battle. They go through more then I can ever imagine, a lot of woman lose their hair which can be their identity. Mine has thinned before because of malnutrition but anyways before I go on a rambling spree lol. I had went to work with Wonder Woman after and ended stretched out over a chair and a shredder because I felt that bad. I could not stop coughing, my body ached, I was not hungry, I was so tired. ALL from iron. I still can't eat well.

When I finally got home, i did all my treatments grabbed my oxygen and heating pad and went to bed. It was awful!! I just didn't want to eat or well do anything. Yesterday was just as bad to, my lungs are crap, my body aches, I can't eat, I have a head ache, and I am just miserable. All from an iron infusion. Its a nasty little treatment. I rather be on steroids and that should tell most of you everything. I have never hated a medication so much because of how it made me feel and I still have another dose to get. 

I am sure you are wondering why?? Well my iron is indeed low and have little choice in the matter. It's either take it or get worse. I rather take it, be sick for 2 week, and be infection free and have good lab levels. Infection free?? Well in CF iron deficiency and infections can be related. Basically if you have CF and low iron levels, you are at risk for chronic lung infections. Which last year I had one for 7 months strait with a break for a week or two in between which ended up in a bad case of pneumonia and resp distress. Which of course was a couple day stay in the big house (our major hospital in the area). But none the less I really hope all this works out for the best. 

In much better news, I hate making these things so not happy. My wonderful Grandma went out and got me 4 pints of vegan ice cream in 4 different flavors. I was entirely upset about not being able to eat (can't even drink coffee) she went out and bought me ice cream just to make me feel better. It taste like heaven. Robo was even over here begging for some. YUM!!

But I guess I need real food in me for meds so I'm gonna coat tofu and bake it lol.

Love Y'all

~Poppet

Diet, Food. Health

Not much has been going on these past two days, I have been trying to get my diet back to small meals thru out the day, every time I get on doxi it gets all kinds of messed up. You can't eat with it, and I like to sleep when I am sick so it never works out to well. I have small breakfast down but I like to eat and recently been to tired to really cook so it has been working out to well. I just need to break things down a bit which isn't hard at all. I need to make large meals and only eat a portion of it.

With POTS, you need to eat smaller, lean meals thru out the day, with CF they need to be high calorie. But that doesn't always work with POTS. So a diet to combine the to safely can be an issue at times. I have almost got it down to science though. I know, no gluten, no meat, natural fat, olive oils, and small meals usually keeps them both stable. With my Saline infusion, I have my POTS completely under control which is a nice thing. Rain still messes with me but its never not going to.

While I am on the topic of  food which I love more then anything. Diet is a key to POTS, and for the most part CF to. Smaller low calorie lean meals helps with POTS, because all the blood doesn't flow to the stomach, making you become symptomatic. Dizzy, fainting, tachycardic... It makes you bloat and over all miserable. Which is never fun. Though I feel fine, I do not want to risk anything and make myself sick or symptomatic at all.

Diet is such a complicated thing when it comes to health, struggling to maintain a proper weight, not drop your BMI to low to become unhealthy. It's a constant struggle and a constant argument with some medical staff, though most of mine has seen me eat. Then you also deal with malabsorption, which I found it almost impossible to eat junk food and feel good at the same time. Though every now and then I do indulge for sure!! SO good!! I had nasty side effects of malnutrtion before so I have learned to stay healthy and mind my diet. Now a days the junk just does not taste good as I always get my food at the farmers market or make it myself.

But I guess I should get off of here and do my night meds,
Love Yall
~Poppet

Iron and more Iron

I wish I had a more positive blog to write today, but the facts are as is. And what type of blog would this be if I didn't write about the facts of what my life is truly like.

Well my Iron is low an I need to get an infusion. I do not absorb anything properly which is why I am on a high amount of everything lol. They assured me this is the way we need to go, and we need to keep an eye on my levels which we always do. So I got this. Who would I be if I didn't?? I have a PICC so I am not so concerned about getting it, and my Doc assured me I can not react to it, there is no documented proof of of anyone reacting to it and thy document all symptoms. Relieved but at the same time, do you know me??? lol Rubes looks at me the wrong way and I break out in hives. I also don't wanna go alone just in case I react to it. Anaphylaxis is a bunch of crap. The last reaction I had of that nature almost did it me in and I do NOT want a repeat of that.

I also officially canceled the Poker Run, but me and Ms T. are still working on selling things so the donations can go towards FARE. I have my Tumblr back up, and I will be setting up and etsy account as well. I am not sure what else to do at this point. These past couple of weeks have been rough on me so I have not been doing much outside of mindless activities on my iPad. I need to get back into my sewing room. I need to get back onto my cross stitch to. I have so much I want to get done lol but I have been so worn out. Infections and pleurisy, now I need to sit in the infusion lab now to. By the time I get home I am so worn out. But I will get a second wind and take this on as I do everything else.

I'm a tough girl, I got this. In better news though. I made my tofu taste like turkey. I have NO idea how I did this, though I am not really complaining. I would love to remake that dish but I have no idea what I did!! I made a super easy dish last night, and no idea how replicate it. I am bad at just throwing something in the oven now a days. BUT it was SO good and high in protein!! LOVED it.

Well i guess I should hop off here the best part of my movie is coming up.
Love Y'all
~Poppet

Reality?? My life

Since I am sitting here not allowed to do a thing, I figured it was a good time to up date this.

I often find myself in conversations with people not quite "getting" my situation and in a position of "i feel sorry for you." Which I had a convo with Wonder Woman about this last night. I hate explaining my situation because I do NOT want people to feel sorry for me. Though I do have a crap disease, well a few of them. I like being treated as though I am an average person. I know what I can handle and what I can do. I like the fact that people complain to me about normal life situations. I truly love random texts about what people go thru in daily life. Though this is not the point of the blog, the point is I am so spoiled with people who "get it" that when people don't it can get frustrating for me because I do get the "poor baby" or "you'll get better." The reality of that is not totally the case.

After going to Harley and sending out a few texts yesterday I found out I had pleurisy AGAIN. Which is my lung grinding against the chest wall. It's quite painful, but I have until tonight basically to find someone to cover what I can't as I am not in the best of health but I am doing quite awesome. My choices are 1. take on the poker run, run myself into the ground and potentially damage my lungs more then they are. OR 2. Step back and go, OK I am ill, I need to put my health first and take care of whats left of my lungs.

The people that "get it" assure me I am making the right decision and I need to take care of my crap for lungs and my health. Thought my POTS is 100% under control as is my CF the damage has been done. The others that here often tell me "get better soon" at first it catches me off guard and also erks me a bit. Then I have to realize this is what they understand of it. It's not that I am feeling worse, I just got confirmation my lungs are truly crap. My life is not gonna get better but I can do everything in my power to keep my lungs as healthy as they possibly can. Which is completely in my power. I'd be stupid not to take that control and fight for my health. I don't mean to make this a sad post, cause its not. I just wish people understood more of what I go through. I have a limit of what I can do. Which I usually push myself but that is no longer an option. There is no more getting better though the pleurisy will heal. It's time to take on less, do what I truly love to do, and I think its also time to alter my diet again, well more so smaller high nutrient foods thru out the day.

At the end of the day, I want people to understand that I am OK, I am doing very well at the moment, and though I am not getting better I am going to make myself stay stable for years to come. I am going to rest when I need to, I am going to stay healthy, I am gonna make smoothies, and I am gonna get as much awareness out as I can. I am also gonna take over Wonder Womans office so I can spend time with my lovely students educating them on POTS, CF and proper cooking!! :-D  To my HU students, she doesn't know this as of yet so lets not push this to hard, though I should be back in soon for Food Allergies with my fave ER nurse ;-).

Now its time to dig for food :-)
Love Y'all
~Poppet

Poker Run

Well, I had to cancel my poker run, I haven't completely made this public yet. A few of you know, OK maybe 4 of you know lol. But I can't take everything on the way I think I can. I also do not want a repeat of last year. Infection after infection. I had 7 months strait of infections that eventually put me into respiratory distress and IVs. Last year at the walk put me on home IV steroids and that was because I made a deal with Superman. I still have the walk this year to. And Batman is right, it means I can make even better next year. I also have more time to set up my Etsy and raise funs for FARE. I do feel guilty about all this, but Sif was also right, if they want to do they can take it over.

I have such poor lung function I just can not afford to make all this worse, though I really do feel gulity about all this. But I also got to take care of me. The other thing I think about is I love my students and teaching my students about POTS, CF, and MCAD. I also am plotting what to cook for their pot luck. I am actually putting serious thought into the senior pot luck. Which so far all my days require way to much work, pasta has to be cooked to order, nacho sauce (vegan) cant just sit there. So I have other ideas which I will surprise them with whatever I do make :-D.

At the end of the day I just can't let my lungs go, I have only one set of lungs. They have to come first, I really do feel guilty about all this. But it will all be OK.

Love Yall
~Poppet

Day in the life

I often get asked what a day for me is like, or what is it like to be me?? We all know how much I love life. And that my life gets very interesting, and quite entertaining at times, but it is also consumed by treatments, meds and sometimes doctors. In the past I have mentioned that I will finally sit down to do something and alarms goes off for meds, and its much worse when I am sick

Well I know longer get to sleep the day away, I use to sleep all morning and finally get up to half function, not the latest I can sleep is 10 to get all my meds in on a healthy day, on sick days I usally get up at 7 take my meds, go back to bed to get up and take more. First thing in the morning, I grab my inhalers use them, connect to my IV which was hopefully spiked the night before, start my saline, to come down the hall for neb treatment and chest PT, this can easily take up to an hour from start to finish. But this isn't the end of my morning routine. I have to eat to take my pills and use more inhalers!! Grab an extra saline bag on the way back down the hall so I can sit on the computer for hopefully a couple hours (shameful I know) but if I am getting ready I do make-up and hair and get ready while I dropping a liter of saline, while making sure all my oxygen tanks are full if I need to go out. Or when I go see my wonderful students and favorite nurses, I combine a lot of these (which I am not suppose to but Wonder Woman knows I do.) to cut off my time. 

Around 2, its time for more meds! YAY! Nothing like AM meds, so its usually just lunch more meds and some inhalers a handful of pills but the least amount thru out the day, I hope by this time I am on my last liter of saline, so I can maybe bake something, fix a nice meal or something. Sometimes I way to go out at the time, so I dont have the worry of reconnecting to my saline once I get home. Only to come home or drop what I am doing to do another neb treatment. Which isn't that big of a deal if I am not sick. If I am sick, I have to sit on my vest for a bit. Maybe even take some steroids which I try to avoid like the plague but a girl needs to stay healthy. 

Hopefully by now I am back to my daily life, cooking, sewing, reading, plotting destruction. From here I should be good for the rest of evening!! Outside of using my inhaler for the evening but compared to earlier its nothing. Though if I am sick, its time to start forcing myself to eat, taking some of meds as not to mix my antibiotics and some meds. which must be taking by 7!! On a good day I am probably just eating dinner so I can take all my night meds and start doing breathing treatments, chest PT, getting IVs set up for the next day, and doing a ridiculous amount of inhalers again. 

My life sorta revolves around my medication and therapies. I don't like it is this way but I do fight for my freedom all the time. I somehow make my life work in this strange life I have. Though these disease are a blessing in disguise. I wouldn't have so many wonderful opportunities in my life with out them. Or amazing people either.  As always I have treatments to do so I must hop off here and get them done to make dinner!! 

Before I forget, to the nurse that gave that website for food, THANK YOU!! Tho everything I want is sold out. I got a few boxes of safe food (vegan/gluten free "cup of soup" no sea salt!!) and a bottle of safe nail polish!! LOVE!! 

Now for treatments

Love Yall

~Poppet

Wonder Woman

When I was growing up I use to think having a nurse as a Momma was crap!! I am not even going to pretend that I didn't. You can't get out of anything. Are you breathing?? Can you move it?? Are you gushing blood?? Your fine!! Could never get out of gym class or school for that matter. But now that I am much older, and hearing things from friends. I truly realize how blessed I am. Sif tagged me in something not to long ago "how to know you grew up with a nurse" or some sort. "Your tough" "your friends call you asking questions" You know?? I had NO idea health insurance companies had nurses?? WHAT?? I mean mine is a phone call or a text away. And I can predict what she says now, but when you grow up with nurses you don't think much of it.

I did grow up with these disease though, I didn't find out much later in life. I was never able to keep up with other cause of it, that never stopped me though. I still tell Wonder Woman to this day I will run a marathon. I was in sports and such, so I always had issues. As I got older and my health declined, she truly became a blessing. And found out why her true calling was a nurse. God knew I need someone to stay on top of me that new what she was doing. She saved me on so many occasions, a couple stories come to mind.

Last year I had a really bad allergic reaction. I was in anaphylaxis for 24 hours, I had eaten the same thing I eat all the time (and still do) and I just could not catch my breath, her intuition got the best of her. I assured her I was OK but was going to do a breathing treatment and reclused. Not even thru my treatment she's in there checking on me and insisted we go in. Good thing she knew what was going, I hate to think what would happen if she wasn't on top of me.

This past summer I kept telling her my one lung hurt every time I breathed. Only on the exhale though, of course she knew, I was like no I'll be fine. "Classic Poppet." So she finally said fine, you have until tomorrow morning to feel better or there is not option you are going. By the night I was in so much pain I had to go in. Once again I was going thru CT scans, blood work, cultures, the works to just find out I had pleurisy.

I will also never forget the few times she has gotten into a nurses face and just let them have it (sorry Wonder Woman). Which is a benefit to me. I appear atypically at most times. With my CF, I am at the point of, I can get air into my lungs, BUT. I can not properly transfer oxygen, or get air out of my lungs fully. So my sats can read normal, and I will be in a critical state. My lungs are crap!! She has fought for me and got me proper treatment. Most days, she doesn't break a sweat, hair is in place and doesn't even bat her eyes.

Years later I am truly thankful and feel so blessed to have her as a Mom. She's been an undying strength thru out the years. She has never ever let me think this is the end. We fight together. :-)

But I really do need to catch her up on our games though
Love Y'all
~Poppet

Cardio

So I saw one of my fave's today, and for once I had nothing but good news :-). No I am not cured but I have improved greatly since my diagnosis. I haven't passed out in years, and my I had an awesome turn around with my POTS. All of my chest pain and fast heart rate is all just my POTS. Which is such a relief. There's no blockages or anything in my heart, so it is all about coping. It's also about fighting back against your disease. I have said on here, I have been told by Wonder Woman, can't walk?? Crawl!! She means it literally to. Get up, get out of bed, and if you just make it down the hall that day, you are up and out of bed. What more could you want?? A life?? Well that comes on days when you feel good.

They say POTS is a syndrome, meaning its a side effect of your main disease. Though, scientist, I would like respectfully disagree. This "thing" eats away at you, emotionally. You hear constantly you are crazy, there's nothing, wrong its all in your head, you need psych help. They are wrong! Oh so wrong, it affect your autonomic nervous system. It just attacks your body, these symptoms are very much so real. Physically?? your heart rate is always high, your BP is usually low, you get dizzy, you can pass out, you depend on Saline, you depend on others. If your anything like me, you hate asking for help. You were raised if you are capable you get up and doing it yourself, and its hard for me to let others help me out. You take pills like its food. Most of mine are supplements. You try to fight daily for you life, in ways most people do not comprehend. Every. Single. Day. You fight to get back to what you consider normal, you fight just to feel like an average person. You long for days when you were surrounded by friends. You may even break down and cry because you feel like you can't take it anymore. And all that is OK.

BUT.

You can never ever give up. You are not you diagnosis, and you can fight back. I was told today that I am doing awesome. I found out what works for me, and I got part of my life back. Its a daily battle, and things for me change daily. I am not even exaggerating. I use my saline daily, I don't eat gluten, I don't eat meat, I eat tons of salt, and some days i barely eat carbs. I even exercise when I can. Some days I make a fort out of pillows and blankets, watch netflix, and eat. Other days I get up and do what I can. Is POTS life altering?? Well yes. It is going to be. But why should that stop us?? What are your dreams?? Ambitions?? What does your soul want so badly, you would do anything for?? THAT is who you are. I am not POTS, CF, MCAD, I am not the girl with the IV. I am the crazy girl with teal hair and tattoos. I am a Chef. I am the crazy cat lover, that is obsessed with Super hero's. I am the girl who loves starbucks a little to much, and the girl who wants awareness so people will have a better tomorrow. Those people that walked out?? They never were meant to be in your life?? It hurts when they leave, but this I promise you, you will be so much happier with out them in your life. True friends, text you and go "whats wrong your to quiet" or send you links to watch ships on your computer (don't ask). They send you smiles, cat pictures, puppy pics, they send you skulls, then video chat you just to see you smile. They never let you forget who you are. They see you and not your diagnosis.

So until we find a cure, lets cope together, lets go out when we can, lean on our friends and family when we need to, don't be scared to ask for help, and remember we are not are diagnosis. We have the option to go "OK this is my diagnosis, this is my expected out come, now how can I beat it." Which you can!! If your still here, I love you :-) keep smiling.

Love Y'all
~Poppet

...

I got a text today that my friend that was gonna come see me, has pneumonia and bronchitis. Yeah as much as I lover her, I am so glad I didn't catch any of that. I can't afford to get pneumonia at all. My body can barely handle bronchitis somedays and its so easy for me get infections. Feel better girlie!!

In happier news, I felt good enough to experiment in the kitchen today, which was quite interesting. I can't eat meat (my health), and allergic to everything else, so I made Vegan burgers. The baked one's were good, the fried ones didn't stayed formed. I really need to get a food processor. The flavor was good though, I was also happy that I am finally feeling well enough to get up and in the kitchen and do what I love.

Random, but The Nanny theme just came on and now I miss my favorite RT that use to come and sit in my room on her break, and has spent so many hours taking care of me!! I miss her terribly.

Anyways, when I am OK, I try to spend a decent amount of time trying to make things I can no longer eat, most being to allergies, other part I don't want to take enzymes and want to see how I can stay healthy and comfortable with proper diet. So far I have found out I can tolerate olive oil, avocado, and peanut butter in small portions with out being in to much pain. I eat a lot of tofu and chickpeas. I also make vegan and gluten free sweets (allergies) I love me some sweets, so I decided to figure out recipes that work so I can still eat regular food and stay safe. So far I have brownies and cookies down. Cinnamon buns as long as you don't reheat them. I figured I am a Chef, I might as well use my knowledge and figure out safe and GOOD food. I also get most of my vegetables at the farm so I avoid most chemicals and GMOs. And its so fun taking the All father there, because he walks around with whicker baskets. He asked me to put skulls on them which I did, they just happen to be bows. Sorry All Father :-).

I want to make sugar cookies with icing this week, I just don't know if I am gonna have the energy to with everything going on, and I need to find a recipe to alter as well. I know how to make icing but I have not made sugar cookies in forever. But I guess I should hop off of here, I haven't been sleeping well with all these meds.

Love Yall
~Poppet

Though I am doing better, my friend is still sick. So we still have not hung out, but they're right there will be other days. There are other trips to come. Still upset about it, however we both need to keep me out of the hospital, I am trying so hard to stay healthy, and sometimes life sacrifices or well social sacrifices are what we have to do.

I need to stay healthy to stay off transplant list, and I need to continue to teach all my students what its like to be me. Its not easy being a chronic patients, especially with diseases not everyone understands. I also had quite a few nurses make not so good mistakes on me and had very bad side effects. Very few nurses work with lines all the time, let alone see them often out side of the ICU and its easier on me and others when they know how to use lines. I also have to see Cardio this week to, I NEED to be at this appointment. There has been much specualutation about my test. Superman let me see the report that was sent to him, and it was 100% different then what my nurse had told me. When I requested to see my doctor, well I was told I had no right to see him to discuss my heart. ALSO, the nurse never told me  I need to do cultures to rule out a heart infection, I had found out thru Superman going um you were suppose to do this. Im like what?? The good news is, cultures came back negative 6 months ago. BUT that does not mean I had official answers. It gets frustrating dealing with people sometimes but I have learned just to go, whatever I'll tell the doctor when I see him.

As for my infection?? Well my PT is back down to normal, and I have been off oxygen during the day, but need it to sleep. Half the time during the day I am in my chair playing farmville, and not open and around. Though I did take it off today and was like, I am not sure this will be off long for sure. But I am so how made it, trying to stay off it tonight, though at the same time I do want to get better. I also want to be off the antibiotics for a bit and not get right back on them. I don't want a repeat of last year at all. Though I am off steroids again!! Was up all night last night because of them, then Rubes decided to come in here and pounce on shadows. She was being so sweet, then she started pouncing everything, my bed, my head, the wall... lol Between the 2 of those I had no sleep.

I guess I had best get off here and take meds though
Love Yall
~Poppet

I think I mentioned last blog I was sick again, and I had been bugging a good friends of my to come up and see me, and my sweet nephew. Well, she gets sick, and of course I am on steroids and antibiotics, just got off oxygen (except at night Nurses orders) so we had to say now, we were both heart broken. But we both get the fact I can't end up in the hospital. Which gets frustrating. Sometimes I feel I need to post a not on the front door that says "quarantine stay far away." Yes that is an over exaggeration but lets face it, I can not get sick. Which I mean it happens more often then it should. But it makes you learn how different your life style is from others.

At least we are pass the stage (for the most part) that I need to wear a mask when I go outside, I still cover my face but we up graded or down graded to scarves. My favorite happens to be a brown scarf with skulls and roses on it. But I constantly feel bad that stuff like this happens. I have to be so careful not only around my friends but in public. I was shopping with Wonder Woman, she needed shoes, and of course she walks me right thru the perfume. By accident. And she tells me to hurry up and move!! lol When we go outside we have to look for people smoking, people that have to much perfume on, and we learned never ever go shopping around Prom!! It is a nightmare. My life has constantly been altered to this disease, but you know?? That is ok. I rather have an altered functional life. I also have an excuse to own way to many scarves.

In other news, I am doing much better, I am still not hungry, or well tolerating food so I get to be creative and make soups. Most of them are soy based but they are actually really good. I also have been drinking way to much sweet tea. It also gives me a reason to expand my culinary horizons and experiment with different ways to make soup. Which I am OK with, i love experimenting in the kitchen. Yesterday I made a cheese soup, with snap peas and salsa. Weird?? Probably but it tasted really good. I need to get off here though and make some soup and post a more interesting blog later.

Love Yall
~Poppet

Never Give Up

I accidently got another infection, I like to blame Mother Nature, we had a beautiful almost chilly week then it sky rocketed to the 90s. Next thing I know, I am calling people going "i need meds." I am not hungry, I have a mild fever, but today I am not huffing and puffing on oxygen. I also told Superman to go for with some pretty invasive testing. Which I am terrified to do this. I have only told one person my true fears of all this. Though I am terrified I will absolutely never give up.

Our there days where I want to break down?? Cry?? Give up?? I wouldn't be human if I told you that I didn't. There are times I get so frusterated with this life, that I want to break down. Then I grab Rubes, my phone, send a couple text, squeeze Rubes until I get clawed, and remember all the reasons I fight so hard. There's nothing more wonderful in life then friends and family who love you beyond measure. Kittens that curl up next to you, old dogs jumping on the fence to love you even though they can barely jump anymore, texts from friends to let me know they care. This is only part of the reason though.

Many have lost their battle to their disease. They are falling warriors. We fight in ways no one understands, or,  are capable of understanding. Example?? Wonder Woman told me, I use to tell my patients I understood what they were going thru, though I though I did, I never knew until now what they really go through. That should be in quotes. And it broke my heart. But she is right, though I wish she had never ever been able to feel that type of pain, she has and she takes it in waves. She has learned to comfort her patients in ways other nurses do not know how to. She can share her grief with family. As heart breaken as that is, that is an describe comfort to the family. Though most people are shocked to find out how sick I truly am. But the pride in her face and when she see's me doing something I have not done in years?? Is just so amazing. The joy in her face, the light in her eyes. *Classic proud parent look goes here"

 The falling?? The ones that lost?? I have the opportunity bring awareness out to future nurses, the public, friends. I also can go thru with research. I can go thru testing to find out what really is going on, and try new medicine, so the next generation does not have to go thru this. I was blessed to have a doctor take the risk and give me Saline, at home for treatment. Two years later its now found to be the most common treatment for POTS. My CF?? I take Mucomist a drug that is not commonly giving. And soon maybe even and MCAD treatment. Asthma?? I got try a really cool injection that helped me get thru the worse part of my asthma. It helped fix part of my MCAD, its not a common treatment. This is what we do, we fight to get our lives back, or we fight so the next generation does not go through what we have gone thru or do go thru.

Though I like to consider myself "an average girl" I like makeup, doing my hair, wearing odd and off beat clothes, and spend way to much time on pinterest feeling insecure. I am obsessed with Alice, Fairies and Skulls. But people constantly point out that I am not so average. i am OK with that. Sorta. Some days I see myself as a fighter, others I see myself as burden and feel awful for what I have put my family thru. When thats not the case at all. They chose to be in my life and love for who I am, what I am, and the crazy things that come out of my mouth.

But the thing is, the point of all this is. NEVER, EVER, GIVE UP. Wake up, smile, and tell the world "I got this." Do your hair, paint your nails, or do whatever that makes you feel a little more you. Do what you love to do in spite of what hand you were dealt. The All Father has told me for years. Just because you have a bad hand of poker, doesn't mean thats what you let other see, you gotta let them think you have a good hand and live it. Never let your illness take control. You are not your disease, your are a beautiful amazing person, that has been giving a gift, find it, love it, use it.

I guess I need to get off here though and take Meds, I got nurses to teach next week and need to get better ASAP.
Love Yall
~Poppet

Were not alone

Sorry I have not updated lately, this past weekend was rough!! I'd stand up and feel like I would pass out and my heart rate would sky rocket and I'd lose my breath and then tell Wonder Woman yeah not moving for a second. I found out friday night when my neighbor knocked on my door. I haven't had an episode like that in YEARS. Lasted the weekend. Then I was on pinterest, and I found thru Dysautonomia Internationl that putting your hands above your had CAN trigger you. Well guess what I had been doing?? Arm work outs and lifted my arms over head 36 times. Because I found another website how to exercise with PICC lines and that was of the moves. Why Superman always tells me to STAY OFF THE INTERNET when it coms to my disease. I see my friends reading this and going really?! And then going yep thats my girl!! lol I started feeling better then I reacted to the air and was way to much benadryl. Then took a prednisone with a shot of benadryl while my nurse (read Wonder Woman) just looked at me like "Really" I was doing a treatment still not doing well and NEEDED more and getting up for water was asking to much. But the good news is, it never progressed and I am ok. Which leads me to my next story.

I needed my oxygen when I was out today, bad lungs last night with the heat of today... When I was out I had stopped by starbucks like I alway do. And the girls that were there yesterday (yes I am there that often) saw me with my oxygen and made sure I was OK. They were actually concerned why I had oxygen and what was wrong. I explained last night, my lungs, and explained I just needed it to function today though most days I do not. Its nice to see there are people out there that truly care about me. Even if they do not really know me. I am sure most are like its there job to be nice to me. And know it really is not. I have walked into places and people refuse to work with me because I have oxygen on or I have a PICC line. I have people treat me as though I have the plague because I need oxygen or IVs to survive. I mean really?? I need a LOT more then that to survive its just not that visible. Sif has seen it more often then not, I am oblivious to it now a days. She's not so much anymore.  I've had people stop talking to me cause of all this before. STOP TALKING TO ME. So when a stranger shows concern about my health its just beyond amazing to me.

It makes me realize that I am not alone in all this. Some days I feel like I go through this alone, and those around me do not even so much as comprehend what I go through, that no one can possibly go thru this "with me" because they do not live with the symptoms that I go thru. But that is the most inaccurate thing about all this. They have to watch me go through all of this. They see me one day and I am ok and the next I am not. Or they see me be OK one minute and barely functioning the next minute. They have seen me fight for my life in ways most never even think about. Struggle daily to common daily things. They have seen my in the hospital struggling to just walk across the room, when they knew the girl that worked and went to school all of these years. Its just as hard on them as it is for us who are chronically ill. There are people that don't "get it." They haven't been there with us when we think its a huge accomplishment to walk with an IV and oxygen, to seeing us walk the mall with just a small tank of oxygen and not collapse after words. The ones that here your sick and make you laugh because they know you are hurting. Call you for hours just to make you smile, or FT you to  play with the puppy in a first person gamer type way. That is going thru it with you. They see what you go thru, they feel your emotional pain and want to move mountains to make it better for you. That is when you know you are not alone in all this. You have people by your side fighting with you to get better.

But I must get off here, I for see fresh Teal hair in my future...
Love Y'all
Poppet~