Merry Christmas

I hope everyone had an awesome holiday. For which ever you celebrate. I know some do not celebrate, my one Gradnam did not due to her religon.  So I get all the different faiths.

At the Poppets house, we had a lovely day. Wonder Woman loved her jacket and can not wait to wear it!! Its a black jacket that has a heart stetchascope that has RN in it and her name under it. Not Wonder Woman but her actual name. I almost put Momma on there but everyone said nooo put her name. My aunt got her iPad so i set her up with that and got it all loaded with games and in working fashion, and got Grandmas smart TV setup, after her and Wonder Woman built the stand. lol What I do?? I made vegan fudge the night before so I sat and watched while Iate and enjoyed some coffee. lol I am content and happy just watching people be happy. I love just to sit and watch people smile. Oh and Rubes had her stocking fill with catnip toys and jingly balls and was in heaven!! I didnt even get them off the card board before started playing with them.

As for my health?? It was a bit rough yesterday but I beat Mario Kart so its all good. My POTS was flared so bad!! First time in a long time. It started with my CF though. I was awake around 7am and I could not catch my breath. On oxygen. So I grabbed my inhaler and laid back down with Rubes. We never went back to sleep. Then I got up and my heart was out of rhythym but I mean what else is new. I was playing my game and the room started to crooked and i jumped cause I though the chair was tipping and this was right after I told Wonder Woman my chest had a mild pressure in it, which again normal. She said heat since I had just disconnected and I was just putting off getting up. Right after that I had put heat on my chest and ate a high salt dinner. Tater Tots and Tofu in Orange Sauce (had 8tbsp of soy sauce in it) and was decent the rest of the day. I wish my health took holidays off but that is mean dreaming.

So we all had a really nice holiday!! I helped my aunt all day with  her iPad, watched movies with Wonder Woman and ate  fudge!! YUM. I also got to catch up with some wonderful friends that made a point to come out and see me as well as some family. So blessed to have people in my life that "get it." Hope everyone had a blessed and wonderful day. I also hope every day is just as blessed.

Love Yall
~Poppet

Educate yourself

This morning, while doing treatment I was checking my FB. And in a friends post they said my health problems were all due to food allergies. What was said exactly really and honestly hurt my feelings how it was said. I sent it to my friends and called Wonder Woman and asked if I was wrong for my feelings and my thoughts on food allergies were right. The only thing they can do to you is kill you?? She confirmed that yes, that is true, and food allergies can not cause health related issues. Then I had to realize these are people that know NOTHING about my health. I am OK with that. My health is common knowledge but not public knowledge. I keep my identity off here for a reason. I do not post my health on FaceBook for a reason. I get a lot of back lash and harassment for my diseases.

Which made me think of this blog post.

ALL of my diseases are unrelated to each other. I just got dealt a bad had and I have chosen to play it like I was dealt a Royal Flush. Keep my mouth shut, unless I know you care about me. Live my life with grace and dignity.

I have defined my health so many times on here. So. Many. Times. I have no idea what else to say about all this. The internet can tell all of this unrelated and NOT contagious. My health is genetic. Meaning its been passed down from my family.

Each disease has greatly affected my life. POTS and MCAD do not even bother me. They are under control. When I have a flare they are easily treatable. Sometimes I have to go in for help but normally I got all this at home. Usually strung out on benadryl but home. CF is slowly destroying my life but it will not defeat me.

POTS is a form of dysautonomia. Dysfunction of the autonomic nervous system, and some research says its a form of neurogenic heart disease. Basically my nervous system beats my heart up, it also affects my kidneys as well in me personally. There are many many many symptoms of POTS. I deal with quite of a few but those are the major ones. I am treated thru a Saline drip, and a very strict diet. I use exercise therapy when I can (my lungs determine this). BUT this is NOT caused by food allergies and food allergies does NOT cause POTS.

MCAD is an allergic disease. It's called Mast Cell Activation Disease. My mast cells burst prematurely causing an anaphylactic reaction. Now this in me does cause my food allergies, but you do not have to have MCAD to have food allergies. Food allergies are a completely unrelated topic for most people. In me?? Not so much. Anything can cause me to have a reaction, I do everything within my power not have a reaction but well thats not always the case. I am dealing with the disease now due to stress from watching someone I care for go thru so much. But read back a few post to update yourself on that.

CF. Cystic Fibrosi also has NOTHING to do with food allergies. Its the worse of the three for me. Its slowly destroying my lungs and weight. I do not absorb food well, I do not digest it well either. It is a genetic disease that effects my lungs, liver, kidneys, heart, and digestive system. It is not based on food allergies. It does not trigger any sort of allergic reaction. It's just a very mean disease that destroys your body.

These are what affects my health. Not food allergies. Before you say anything about ANYONE, whether they have a disease or not, think about what you would want people to say about you. Think about how you feel when you are put out and put down.

Love Y'all
~Poppet

I hate Wal-Mart

Saturday or Sunday me and Wonder Woman decided to go Christmas shopping. I can post details since she knows what she's getting and doesn't follow my blog.

So we started at Best Buy are favorite store. We were gonna get Grandma a blu ray player. Well we started looking around and I had the TV she uses since I was 13/14 so its pretty old and a blu ray just would not connect to the TV, so we started looking at TVs. Well TVs are expensive and I got the brilliant idea that we should get her a smart TV!! Shes been wanting a smaller TV forever and I was like you know we might as just get her this. She hates that gigantic TV and she wants Netflix so lets do this and we did.

Well there was one problem and we had no where to set this TV on. The old TV stand was moved into my room which highly utilized. I am talk stereo, meds, clothes, and hats. So there was no option of moving it out. So we decided we'd get her a stand for it. Well we started at Target. Which is my favorite store ever. They have "safe" makeup. Well parts of it can use. So I was looking for a TV stand and makeup... We couldn't find anything that was decently priced and really nice. Target had a poor selection which upset me. But I got movies while I was there so it evened out. The original Willy Wonka and Space Jam!! OK so we are on a mission and i am like I hate to say this but Wal-Mart. I HATE Wal-Mart with a passion. So we break and go after much discussion. Back to hate Wal-Mart

So I walk in and immediately feel awful and my oxygen is on. Walk further back, hit the makeup section and the brand i want isn't there and walk strait back to the TV stands. By this time we had only been there 10 minutes or so. I am coughing and wheezing and I tell Wonder Woman. My lungs are filled with fluid, I used my inhaler got what I needed and went to check out. It was getting bad so I went outside while she paid and was much better. Or so I thought...

Well my lungs were so bad by the time I got home, i needed oxygen on 3 (not good), benadryl every 4 hours and a lot, double dose of albuteral, extra chest PT of 4 kinds, steroids, and I was struggling to the point, I was not allowed to carry my Ipad. Wonder Woman did my IV, she cooked my dinner, and put me to bed. It was THAT bad. I am still on oxygen at 3, benadryl, and steroids. I am still getting 4 types of chest PT. I am so sick from that stupid store. Amongst the stores I can't go in!! lol

The good news?? Grandma loves her gift (i live with her).

Love Yall
~Popept

Nurses

I always here some very harsh things about nurses. Which to me it's heart breaking and nerve racking. "You have a nurse as a Mom she doesn't baby you??" "Nurses just educate it's the doctors." "She's just a nurse she has time." They constantly think nurses are there just to be a made and nothing more. Thats the must un true and demeaning thing to say to a nurse. No I am not a nurse. I am the daughter of one, and a friend to many." Also, there have been SO many times a nurse out smarted the doctor, saved my life, then cried with me.

Nurse's are there to comfort you when you got the worse news of your life. They pick up the pieces of what the doctors just did, and they make sure all the meds you have are proper and not counter acting your symptoms. They make sure doctors do not prescribe the wrong things or miss something.

They are there to save your life when your body is shutting down, or you had a "hold my beer watch this " moment. They assess you. They here what you are saying and what your not saying. They are the first to run to your side in a crisis and the last to leave you.

I had many nurses dry my tears while they are working on me. They held my hand for hours or braided my hair after the biggest crisis i ever had just to get it out of the tape. They have called doctors on my behalf, they defended me, and have been my biggest advocate so they can see me walk out the hospital. Holding my hand while I try to walk with poor lung function to keep me up and moving. Fixed every mistake I have made with my healthy and helped me learn ways to not make the same mistake again.

Nurses are the one's many patients not just myself have shared so much sorrow and joy with. I have many stories when it comes to nurses, from my point of view and others. Nurses are the heart beat of the hospital, we depend on them in many different ways as patients and family of patients. I have been comforted over losses and comforted over bad news.

Nurses are blessings, they are angels, and they are hero's. They sacrifice everything to care for you. To care for me. Remember that next time you need them.

Love Y'all
~Poppet

Seize the day

So I finally found enzymes i can take!! I have to say they are a huge blessing, i just need more for meals, there enough for snacks but my doctor didn't want to over whelm my system all at once. But I can't tell you how awesome they are!! Strange what works at times. I got to eat food I hadn't eaten in YEARS. Food that i am not allergic to that just made me sick. It also helps me not bloat when I eat at meals to. Which I am more then ecstatic for. I never thought this would be possible!! I can get healthy... I can do this.

But on to more important things.

I recently got some terrible news. Now about me. But I went to tell someone else and I just broke down which is horrid for my poor lungs, the person that gave me the news told me, I was not allowed to cry and that God told her she'd be OK and she would be. I just stopped and cried some more, but not for their pain but their hope and their faith. I am not even going to pretend this situation is OK. Nor am I going to go in-depth with all this, but what it made me realize, you attitude is everything.

So often we mope in self pity, we cry for what we lost, what we can't do, and we dwell on all this. We fail to see the hope of the future and we go into a situation thinking of all the things that can go wrong. We fail to see the what blessing we truly get from al this. I was raised in a religious house hold and we were taught and told  to give it all to God. But its not so often I see people actually do this, and they are an incredible example on how to deal with such devastating news.

I can't say I hate me disease because with out I would not be who I am. I would know how truly beautiful and wonderful life is. I would not know what a gift today is and how to truly love everything that comes my way. I have been put in a position where I can talk to young people, and I can talk to people my age as well. I can show them what life truly means. God does not give us troubles and disease to let eat away at us but to guide us where we need to go.

Yes diseases are devastating, some times bad news can destroy your entire world, but we also need to stop and see what life is trying to teach us. We need to let people know we love them, we need to spend today doing what nee to be done and not putting off unto some one else. There is good in every situation we just need to find.

Love Y'all
~Poppet

Life gets crazy at times.

I had a nasty bug in my lungs as y'all know, and theres been a lot going on around here, and for once in my life I am not sure how to handle it. I can handle my health with grace but when it comes to others i care for, I handle it only a bit better then I handle Dog Dog. So not well. Espically if they are a huge part of my life.

Well, yesterday morning I got a phone call to update while I was getting ready and I broke down. Which they assured me that they were OK, and it should not be serious at all. I of course always assume the worse but it's what I do. I told them that I know how to handle my health with grace, i just can't handle this situation at all. It's quite difficult, it is someone I have come to depend on just to help me function some days. Then we got on the subject of the ICU, 2 years ago, when the All Father told me if he had to do it all over he would have still had me. I was a mess, and was apologizing for being a bad daughter and have this awful disease that I never asked for. Wonder Woman didn't know this had all happened and she assured me to that if we had all this to do over she still had me to because I am destined for greatness. She was trying to calm me down, because if anything so much as happened to the person I was upset bout, everything might fall a part, who will help me, who will take care of someone else. As always she assured me, we can handle it all. It's what we are bred for. To take on a life most people can't handle and make it work and make it function as smoothly as possible. Some days I just don't understand. Other days I know exactly what needs to be done. But we get thru it all the time.

As for me?? I am doing OK, I have been battling an infection. I am pretty sure it is gone, now I am battling the weather. Needless to say I have taking a beating from all this. But I will get better. I have not been able to exercise in a long because of these silly lungs. But I am bound and determined to get better and get back on that machine so I can stay healthy.

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

Encourage others

Being so sick, I get a lot of time to watch TV and Movies. Which made me think. Woman who are chronically ill seem to be victimized. For once I just want a sick girl to play a role of an ultimate bad ass. She fights for whats right, she fights for what she loves, she pushes back at her disease, she fights for schooling and the career she wants. She gives the man a run for his money as she knows she deserves the best. We are not victims of a disease, no one is, man, woman or child. We are people with souls that deserve the same respect as other people.

I have noticed in real life to, we are pushed aside as week. We are looked down upon and shamed. But I never see anyone fight back. I have a bad habit of finding them in the store coughing and clearing my lungs. Oh yeah obnoxious and gross but it gets my point across. Its makeup that makes me look healthy, its lipstick that covers my pail lips and nail polish that covers my purple nails. You can look at me however you want to though, take pity or not. I will show you I am just a strong and capable as other people and will not allow myself to be pushed around or looked down upon. I have been learning to take this a bit more gracefully and not obnoxiously.

Just a little pet peeve of mine haha, I also want young people to know, or those recently diagnosed, fight back against your disease, your circumstances. Your disease is not your identity, you are a heart and a soul. Do what you love, be who you want to be, think outside of the little box society has put around us and let them know you can do great things. Change the world and change how people see us. There will be days when laying in bed is the best we can do, and that is OK. We all need a break, we all need time to rest, we all need time to grieve, and we all need a moment to recharge. But never let that setback stop you from getting up and fighting back.

Love Y'all,
~Poppet

Be thankful ALWAYS

Happy Thanksgiving!!

I have been doing nothing!! I am sitting here in my chair, watching Wonder Woman play her game, texting Sif and friends. I broke my oxygen, which was fixed, and washed my hair which was a feet in itself. Lung infections are the worse. They make me non functional. I just came right out to my chair after and sat down, breathing like a ran a marathon. Which is why I am here doing nothing. I have been assured I look better which is good because I am feeling a bit better. I have a couple doses of meds in me to knock out this infection. The other problem?? I have been drinking my calories. I can't being this sick which is crap because my weight will drop drastically. At least I am getting calories. Just not good calories.

However, today is a day of been thankful. It's the season of thankfulness and giving. Everyday should be like this, we should also be thankful, giving people. Its how God wants us to live our lives. I just got meowed so Rubes agrees. There is so much in life to be thankful for, its just about stopping and counting your blessings. So often we go "but I want a better life," "I wish my life was different," "They have nicer things then me." What really matters tho, is who is around us. Who loves unconditionally. The many things we have (they do not have to objects.) I am blessed in so many ways. I have a group of top notch nurses that stay on top of me. Though it's a curse to, they have kept me healthy and alive. They work together with Superman to keep at home and healthy. I have medications that keep me breathing, and my heart in rhythym. I have a silly vest that keeps me from having old fashioned, pound on my back PT, I have advanced medicine technology to increase my life while keeping me at home. I have the best friends I could ever ask for. They are constantly around me and encouraging me in their own ways to keep moving forward and never looking back. I have a sweet kitten thats really not so sweet but loves me anyways and on her terms. I have people that message me just to see smile. I am so blessed in so many ways.

Today I am at home, relaxing, and enjoy my surroundings. That is the most important thing to be thankful for. God has blessed me with such amazing and caring people.

Happy Thanksgiving!!
Love Yall
~Poppet

Sick Again

Sorry I haven't been on here. I have been sick again. I guess it goes with a good movie that has come out. I am not even joking either. I was just talking to Wonder Woman, "every time a good movie comes out I get sick." Oh thats right you were sick for Thor. "Yeah I was sick for that one to." Which was the most recent. "Captain America." Oh thats right... Oh. My. Word. I refuse to like anymore movies!! This is just crap. But as always I will be OK. Just a silly lung infection. I know it's not "silly" but when you deal with this as much as I do, you come to terms with it.

I feel the fluid in my lower lungs, which I know can be serious. I informed Wonder Woman about this and she assures me I'd be OK. But I can not tell you how much it burns. It's terrible. I can't eat, I am drinking my calories. Wonder Woman brought me some sweet tea, which did solidify the fact that I do not feel good at all. There's something about sweet tea when I am sick. It's also the only time I drink it as well. I am sure it's because it keeps me blood sugars level while being so sick and not eaten the way I should.

The holidays are coming up as well, I am so tired of being sick every holidays. I always feel so bad that I put my family thru all this, being sick and all. It's not just being sick. It's the fact that have watched me deteriorate, they watch me get weaker, they watch me fight for a life daily. I just want to give them a Christmas miracle and see me being healthy. But before this gets to sappy, since I am so out of it.

I have figured out what I am gonna do for the students luncheon. Or well half of it. I just don't know what to do with it. I am very unsure of what to fill it with. What would be an amazing combination of food. I have some thought but again I can't put it here, just in case that they read this lol.

I'm also working on a gift for one of my nurses. No not Wonder Woman lol though I need to figure something out for her to. But for one of my favorites. I have been working on patterns for them as well to give half of it away lol.

But I feel awful,
Love Y'all
~Poppet

:-)

Sorry I have not updated as much as I should have. I have been a bit busy lately. Last week I had 3 appointments and of course the holidays are coming up which means baking, cooking, and getting ready for the holidays in general. Which as much as I like to decorate, even tho my sense of style is a 180 of Grandmas, it means a LOT of dust and a lot of old cold things coming in from the garage. Which means i recluse into the darkness. Yes, because that doesn't make me sound insane. lol

Holidays can be a huge cause of stress for me and Wonder Woman. We have to have all bases covered, and some in field and out field. We need to keep everyone sick out, we need to limit my baking, we need to make sure everything is clean, and then we get to explain my life to people that do not come around all the time. With some I tend to be a bit short with, which I know is wrong, but if you choose to come see me once a year and wonder why I have had a down hill spiral then well... The people I call my students, and my little family I seem to adopt, I am more then willing to sit and tell you what my life is like, and explain my i guess you'd say struggles. Which they actually care, I tend to catch on to who cares and who doesn't. There well just nosy and want to but into my life and give me needless pointers on how to take care of my self. Tis the season right?? lol Sorry this is one of those blogs today.

This how interesting my life can get around the holidays. But in the end I some how make it. Battling off infections, avoiding allergens, and not pushing myself to far. Which I tend to do lol.

There really hasn't been much else going on. Just lots of doctors appointments. Which I am sure I need to my one doctor about my glucose issues but I mean thats not the end of the world since I know how to control my sugar by diet. I think might be a good idea to just in case its more serious then the way I think about it.

But I must get off here for now,
Love Yall
~Poppet

Christmas

Recently I was asked, "What do you want for Christmas??" With out even looking up from my computer I said "a cure." By this time they were standing behind my screen and looked at me and said "A what?!" I want a cure!! I looked at them with a dead serious face and repeated myself and added to it that I was serious. "That doesn't help me!!" By this time someone else was in on the convo and I told them the exact same thing and I was informed I needed to be more a realistic. Fine. I want a tattoo... Cringe worthy cause they do not support my addiction of art.

Yes, I am that person you make fun of me for wanting a cure, I'll push the fact that I want another tattoo, I need to express my life with this disease and I do it thru art. OK well that didn't go over well either lol...

By why is it so far fetched to want a cure?? People are working on drugs that alter the gene's in my body to help me be less symptomatic. They have research to find the cause of some to hopefully find medication to help prevent all this stuff. There are new inventions daily that help assist with the diseases to make life more livable.

I want a holiday where I do not have to explain food allergies, why I am getting sicker, why I am oxygen, why I have an IV, why you can't be sick when your around me. I want to decorate, I want to get out side and put up lights, I want to see Wonder Woman smile and not be so worried. I want my family to interact with me, I want to take all the pain and exhaustion away from my family. I can do all this with a cure, and for everyone that can relate to this. Why is it so unrealistic not to want this for me?? And Everyone else. All this brings me back to less December when Wonder Woman told me with tears in her eyes that if we have to we'll bring Christmas here. It brings me back to hearing Code Blue after Code Blue. Which means someone lost their fight near Christmas if not they are in critical condition. There are children in hospitals wishing for the same thing. There are people in nursing homes and hospitals that have no one. Its heart breaking to think of what goes on. This is why we need to stand together and fight for it.

So yes, I do want a cure for Christmas, not for just me but for everyone. I am not crazy for wanting this. It makes me human. It makes not a shell of armor to protect me from the world. It makes me real.

My Christmas wish is this: May God keep us safe, warm, and loved. May this year be the year we have a break thru medication that will help relieve of us of our suffering. May everyone that fights with us no they are loved. May God bless the one's who are by us daily and in our support group with his work. May He protect him and us of what may come.

Love Y'all
~Poppet

...

It was a crazy week!! A good week but a crazy week.

First, I'd like to thank the SNA for helping out me and Wonder Woman at the walk Saturday!! I had a blast with you!! Thank you for educating on Food Allergies and thank you for supporting me or well us in the battle against food allergies and my health in general.

Which health wise, I did really well!! I forgot snack *insert Wonder Womans look here* which thankfully it was a FOOD ALLERGY walk and she found yummies!! and Cotton Candy!! OMG can I tell you how many years it has been since I ate some?? Like oh I don't know 10 years!! And milk free sour cream and onion chips, pizza flavored!! OMG they were so good!! and COOKIES!! OK, a lot of this I can make myself, but "processed" food is something I never ever get to eat. It makes me super sick or I am allergic to it. Usually its I am allergic to it. So that made oh so happy!! More so that I got to eat chips then anything. OH SO GOOD lol

I got sick once or twice this week, or well my heart was out of control. POTS. I have learned some valuable things.
1. Diet is KEY to fighting POTS. Yes I do need meds, i do use an IV daily, but diet is key. I always eat a high fat, sugar, and salt breakfast every day. I missed this one day and it made me symptomatic. I had sugar!!! lol I love Sugar but it did affect my stability. My heart rate was insane, I was dizzy, and my chest hurt so bad. Yes a lot of you say "how dare someone say switch my diet, its a disease that I can not control!!" Truth. However, certain foods and how you eat them do affect your stability.
2. Lots of water and saline first thing in the morning is also key to helping maintain stability. This maybe more so for me then most people that read this. But saline is something I use for my POTS, and lots and lots of water. Not enough in the morning makes me symptomatic.
3. The oddest one... Pulling blood from my line makes me symptomatic. Blood does not bother me at all, I watch them take my blood all the time, i watch myself get tattooed, it really does not bother me, but having a lot of blood pull does.

I have been on my proper diet again, small frequent meals, plenty of salt, a decent amount of fat (good fat), and carbs/sugar. Not a LOT of sugar but enough not to drop out my sugar levels.

I must hop off here for now though must find some lunch so I can do more treatments :-D

Love Y'all
~Poppet

.

Things have been a bit crazy lately!! It's all been my POTS, and this is new for me!! My POTS is always well behaved, my CF not so much.

Monday, I got into to heat twice, and I was so symptomatic that night, I felt high as a kite, my heart was racing, my lungs were crapping out, I couldn't catch my breath... So I just stopped what I was doing and went strait for Wonder Woman!! HELP. lol More of a let me throw my body over my recliner, not get my IV high enough, barely get my oxygen on and let her watch me. She got me prednisone, my oxygen turned up, my cymbal stand for my IV, benadryl, and everything I need to stable out. I finally came back down. I wish I had a better way to explain this to people with out POTS, what an episode like this is like. But... Have you ever been so drunk or high you can't feel your body, its almost like your not connected to it anymore. Thats what it feels like, and when I hear myself breathing I get all "oh crap."

Yesterday, I was just required to rest. You can't do crap!! :'''( but but but Wonder Woman please?? Yeah, nope!! She even offered to help me bake, we all know how I am in the kitchen. I am not the nicest person in the world to deal with, I am the exact opposite, everything has its place, everything works into together, and you add a splash of things here or there. It's always a question of whose gonna scream first, or if we just won't talk... It was really awesome and the food was perfection. Vegan, gluten free, pumpkin loaf muffins. OMG they are so good, and apparently according to her, pumpkin smells like purred carrots, only something a Mom would know. Right??

Which brings us to today!! I finally got to meet Ms. T and had awesome donuts this morning!! I can not tell you how long it has been since I had a donut!!! They are so good!! I loved them. My hearts a little screwy now but thats OK, it's nothing I can not control atm, but trying to call people and alert them.

The walk is very soon as well, so I have been working on that as well. So this week has been insane!! But it has been good and I have high hopes for all thats to come this week.

Love Y'all
~Poppet

Halloween

Halloween is almost here!! I am excited!!

It's the best holiday ever!! I get to see a good friend of mind, I get to celebrate my favorite holiday and I get to sorta dress up, I can't do to much because I just can't handle on that stress on my body. Its really hard to handle life when you are chronically ill. You have to battle the "what i want to do," "the what I should do," and "the what I need to do." I am going to do a dramatic make up and do my hair somehow which I love do crazy in your face makeup but only so many places i can wear it. I do not go out at night or do much of anything formal so this is the one day I can do fancy makeup and not be to weird. Ah who cares I always look "weird."

Halloween has always been my favorite holiday but as I have gotten sicker the less I have been able to do. I have a limit of what I am able to handle physically. I can't put stress on my body and I get tired very quickly. So there is no decorating, there is no handing out candy by myself, there is no dressing up and having fun. But I am so thankful for the people that let me hang out with them for holiday and allow me to apart of their lives. It makes me beyond thankful for what people do for me to help me out and help me live a normalish life. I still have to have my oxygen at hand and IVs, but I am ok with that, I also see it as half normal.

I am gonna keep this shot but wanted to wish everyone a happy halloween!!!
Love Y'all
~Poppet

Love Your Life

I am in my late 20s, when the house is "to quiet" they still come looking for me, I am either up to something or I am sick... Today I was dying my hair!! lol Putting the teal back in it. I was so excited to be able to dye my hair again. Its the little things in life. I use to be upset that I could not dye my hair, and oh how I missed my pink hair, and I needed it back. I told Superman and he said I could!!! :-D a year later I still have dipped dyed teal hair!! lol Truly the little things in life.

Then there is painting my nails. I am sure it was Sif that found the nail polish she's awesome like that.  Well I now have a collection of nail polish and painted my nail all the time, something I thought I'd never do again, or get tattoos for that matter.

It really is the little things in life that make me smile,  a simple text to let me know I am thought about. Hugs after a long time of not seeing you, a phone call, or an email out of nowhere. Thats what matters. I didn't always think this way though. I took advantage of the face i didn't have to think twice  about anything. I was a dare devil that never said no, now I have to think everything over. Will it bother my lungs?? Will it stop my heart?? Am I allergic?? Whats going to be there??

Yeah Wonder Woman had her hands full needless to say lol which is why they still wonder what I am up to. I know Wonder Woman came home one day and my door was hot pink and teal. The fumes were so bad in my room i had to sleep on the couch... If you know her you know the look I would have received. But thats not my life anymore, though those were some fun times. And somethings I do miss terribly like concerts. But I learned never take anything for granted ANYTHING. You can walk the mall?? Thats amazing in my eyes. I remember once me and Sif under estimated the distance from one to the next... Yeah I survived though. Now i have oxygen to get me there. I loved theme parks!! Now sighs OXYGEN. Which is crap but I have so many amazing memories with a lot of people at those places. It was truly awesome and I always beg to go back haha. Yes to sit on oxygen and watch people enjoy themselves.

I have learned to enjoy the little things in life, like painting my nails, doing my hair, getting tattooed, finding an awesome new album!! Those things are what truly matter. Sitting with my parents at the pizza parlor getting in trouble with the All Father because its what we are good at. Hanging with my friends to laugh over nothing, snapchats, and FaceTime. Going outside to feel the wind in my hair and the sun on my skin. These are truly amazing things that so many take for granted and we just need to slow down for 10 minutes and just take everything and thank God for such a beautiful day. Every single day, and when it rains, thank him for the sun that comes after the storm and the shelter to protect you.

Thats what truly matters,
Love
~Poppet

Halloween is coming

I am not sure where I left off last week, as I have not been on here all weekend. It was a good and bad weekend really.

Well, yesterday I was sitting in my chair drinking coffee watching Hunger Games, next thing I know I couldn't catch my breath, my chest was tight, I couldn't move my mucus. Wonder Woman said I looked hot and was probably over heated. The thing tho was I was freezing. I did a cocktail of stuff to feel better. Oxygen, vest, mucus thinners, pills, and spicy food. I woke up with chest pain but I mean my Doc says not to worry and lay down, use heat, run your IV. YAY POTS!!! (Note: This is what my doctor tells me to do, if you doc tells you something else do not go by my blog). So it went from CF to POTS. I got everything under control now I think...

Saturday was fine though. I had pizza (I made it) with Wonder Woman, I went all over town looking for Vegan cheese that I could not find and was willing to drive an hour out to get some. lol Yes it is SO worth it but that day it was just to much. Was not planning on coming home to make pizza, I was gonna make it Sunday, but anyways. I am trying to work out recipes for the Seniors in December. My pie dough roll overs that are for dinner worked much better then the pizza. I was not a fan of the dough and neither was Wonder Woman, it also did not heat up well. I know the pie dough was. OK this not a food blog!! lol

Halloween is this week though!!! I AM SO EXCITED. I am going to see one of my Mom's and hang out with her:-D. I am not gonna do much to dress up, that is just to much on my poor little body. So I am gonna do my hair, and makeup, hopefully classy pin up style. I also have a 70s outfit in there to, crap I have 80s to. So we shall see what happens. I have not cut pumpkins or decorated, I am scared it will be way to much on me, and then need a ton of help to get it up and down. Grandma already helps me enough I do not want to put anything else on her. I know cutting pumpkins can cause bacteria and such to grow so thats out as I can't afford another infection. Though I just found out how to color one, so I need to get one ASAP and color it like my favorite drummer.

Not much else has been going on... OH my blood sugar has seemed to stable out a bit, and I am still eating my sugar as I am suppose to :-)

Love Y'all
~Poppet

Update

So I am still struggling to keep my blood sugar stable!! What in the world. I am just gonna stick to my normal diet and eat cookies and PB and chocolate chips twice a day. I am sure I eat peanut butter more then that lol. I never thought something like this would happen at all lol. I have even been lectured about this but I had NO idea this would happen.

Refined sugar is AWFUL if you have POTS. It can make you symptomatic, which means you are going to have a rapid heart rate, possibly pass out, mess your heart, and over all just make you strait miserable. Considering I have CF, and diabetes is a risk in the life of CF, I figured not a bad idea at all. Boy was I wrong!! lol. I have been downing sugar like I never have before. I am sure I am gonna eat more before I go to bed. I get shaky, nautous, weak, and very tired. I eat sugar and feel much better then an hour or so later... Sighs...

I am all about being healthy. I eat a balanced diet, I stay active, and I drink an absurd amount of coffee. I drink it black, so its healthy. Yes that is my story and I am sticking to it. Its delicious and keeps me stable somehow.

But on to happier news. I did make my weekly starbucks and target trip, to walk around. Get some exercise, pick up things for Wonder Woman. lol I have a crazy interesting life. I didn't stay as long as I normally do but I did still get out and walk around. If I can get my life back stable, I am gonna start working out again next week. Which is great for my lungs. So I am praying that I can get there successfully and safely. And somehow manage to keep the cat way from the tread climber as that is her place to hide. She loves it in the sunroom, she can stalk her prey.

I am still sleeping with my oxygen on though, it does help with the horrid stiff ness in my lungs. Apparently I was not getting enough oxygen in my lungs at night, so far this has helped keep me stable and I am staying off of it during the day unless I go out, which then i need it. There really hasn't been much going on.

Though I did experiment with a brown sugar butter cream icing, its grainy but soooo good, and I had it on chocolate PB pancakes. OMG, yes it was gluten free and vegan, and it was so heavenly!!

But I need to hop of here and do more treatments and eat more sugar.

Love Y'all
~Poppet

Dysatuonomia Awareness Month

Well I had to quit the No Sugar Challenge. It was highly affecting my health. The first night Wonder Woman put on infection watch my lungs were so congested. I couldn't talk with out coughing and wheezing, the next day I was struggling with low blood sugar, calling her going "Hey I am dizzy and feel sick." She told me to eat sugar and eat it now. I did, and I am still struggling with it today. I figured with CFRD, no sugar would be fine, since I do not have CFRD YET, yep not how it worked out. I guess I depleted my sugar levels and now I am trying to catch up. A nice snack of pretzels, peanut butter, and chocolate chips seems to be helping. I am currently stable, well just had my snack. This not the expectation that I thought was going to happen.

Though to more important things. It's dysautonomia awareness months. One of the things I live with. It's define as dysfunction of the autonomic nervous system, which is what controls your blood pressure, heart rate, respirations, digestion, basically everything you do not think about it that your body controls daily. My form is POTS. No I am not gonna bore you with the scientific definition of what it is. But I will tell you what my daily life is.

Every day I wake up and connect to saline, take a handful (10) pills. I do other meds to but they are not for POTS. I down a bottle of water and eat an apple with peanut butter. This what I know makes me stable in the morning. I run 2 - 3 liters of saline a day, and eat "just enough" salt. Which I am OK with excess salt. Im a Chef!! lol Anyways. I have to stay off my feet as much as possible. There is no excessive standing, I could pass out. I get chest pain from excessively high heart rates. I eat several small meals a day. Normally high in salt to keep me stable.

If I go out, I need to take saline with me. I need to make sure I take a snack with me, I need to make sure I have a full bottle of water. I can't get hot either it will make me sick. I can not go anywhere with out this. I have to keep an eye on my blood pressure, I can not miss a meal or a dose of medication. So I tend to take all this stuff with me as well...

This life is crazy. Its constantly revolving around medication, IVs, doctors appointments, going to get B12 shots, different infusions, constantly making sure I have taking everything. Staying in doors while its hot, making sure the house is cool, not going somewhere there is no electricity. It seems like such a burden. However there are people with POTS that are sicker then I am, and people healthier then me to.

There is lots of praying to, asking to help me thru the day, to stay stables, stay out of the hospital. Its a crazy life. But its a blessed life!!

But I must go do lung treatments.
Love Y'all
~Poppet

Update

I am not even sure where to start this blog today!! haha I guess i'll just pick something and go from there.

Well Grandma just set up the sunroom for me to do all my treatments at. Its so odd being in the sunroom though, I do not have Dog Dog demanding her attention. Its also odd being allowed out there. I was horridly allergic to Dog Dog and it took a bit to get the allergens out but they did it and now its my treatment area. I know my equipment can get loud. I can also now go out there and walk on the tread climber (with no tension) and get my lungs some exercise. I gotta beat this crazy disease. I gotta stay healthy. Between that and diet. Well treatments, exercise, and diet I am bound and determined to stay my healthy.

Staying healthy is hard!! Diet is hard. Well being sick is hard so I am willing to fight all this with all I got. So i decided to do a week with out sugar. Processed sugar. I do not eat that much sugar as it, but its a good experiment. How does sugar affect my health?? Will have to eat more to keep my blood sugar stable?? Will I be less symptomatic?? I am curious to see how this works. Post the outcomes. Giving up gluten and meat has helped me dramatically but its more so that I can not digest them. Its painful, makes me bloat, and makes my symptomatic which is kinda crappy but I rather be healthy then eat stuff I should not.

If you read the last blog you know I have been a bit sick with my lungs recently. I had some horrid flare that put me on 3l of oxygen, Benadryl, and lots of treatments. Well I had come off my oxygen and was waking up with my lungs so stiff that I could barely breathe!! It took tons of meds to get them moving and one day this past weekend I was going back and forth with Wonder Woman because i did NOT want to put my oxygen back on, but apparently my lips were pail, and I was showing signs of stress... Nurses lol NURSES!! It came to that to lol "but I don't wanna!!" "Im the nurse do as I say" "Yes Mam."  I promise no matter what you tell a nurse especially GOOD nurses they can pick up on signs and symptoms that we don't say. "Your lips are pail, your struggling, and your coughing." So she told me that if I wear the oxygen at night I could be off of it during the day and my lungs would "loosen" up. Sighs she was right. I have been OK for the past couple of days using it at night. I also bought a ginger lemon tea. OMG its so good and it soothes the airways so well. I am in love with it.

I think I will go make some now
Love Y'all
~Poppet

...

I have been pretty sick for the past 24 hours. I got my b12 then a major storm came in. Yep it led to me texting Wonder Woman "i can hear myself breathe, on oxygen, and benadryl... Which lead to a phone call going whats wrong?? Hmmm i DK lol The weather?? B12?? My body hates me?? Yes feel bad for her I get fiesty when it gets to much at times. My oxygen is still on 3, but I am off benadryl and steroids. So thats a plus but I did up my PT to day, I turned it up and increased the amount of time I am doing it. I also upped my saline. So I do have it under control.

I am more then ready to get back off my oxygen but the weather has suddenly got yucky again. And I swear my PICC dressing is hanging on by a thread. I was to sick to get it done last night. When Wonder Woman is peaking in checking on you, you know its kinda bad. Which I always feel bad I can not protect her from this crazy life. Lets face it, she's a nurse, and an awesome nurse that is well respected by my physicians. So she not only gets it, she knows how serious this life can get. Or well is. I always try to protect people from this crazy life. I try to be honest and strait forward about my disease, but at the same time play down how serious it is. Which is harder to do with CF, then it is POTS. MCAD is pretty bad to.  "Whats MCAD??" Ohhh.... its just a disease that affects the mast cells in the body, they can burst prematurely and cause an anaphylactic reaction, it has way to many triggers and I take meds daily to help lessen the likely hood of a reaction. I usually get this dear in head lights look. Or if they are medical, or know what allergies are, they get this OMG look on their face. Its kinda serious.

Yes all this rambling has a point lol. At the end of the day I have to some kind control over all this, so I tend to right on here, sew when I can, and COOK!! Which is where I get some control and say over how I feel. Food is a big deal on staying healthy. I see the "DUH" looks thru the screen. But really I can't eat fast food, fried food, gluten based food, high protein food, and I am allergic to quite a few things. "So what do you eat?!?!" I am vegan!! I eat a very healthy protein based PLANT diet, with gluten free, dairy free, and egg free options. I make recipes, i alter recipes, and learned to make things that are safe and to keep me healthy and pain free. Now I do have to stop what I am doing to take meds, I have to keep an eye on IVs. But isn't that normal?? lol On days that I can, I get up and moving to keep the junk out of my lungs as much as I can. Its a crazy life.

I also take a lot of time to educate people on what my life is like, the best I can. I need all the awareness I can get, not just for me, but for people like me. If more people knew what we went thru, if more people understood are "limitations" and how we can push ourselves to do what we think we can't. Hoping people would be less judgmental. I always here I need to be more positive, I need to pray more, I need to stop dwelling. Alls I have to say to all that, "I got this!! This is my life and I make the best of it, oh and I am well into my 20s and have my own lungs!! THATS AMAZING!!" I also thank God for allowing me to be so blessed with all these crazy people in my life, and allowing me to still be able to have function!! OK but before this turns into a rant which I think this already is.... Ima hop off here lol

Love Y'all
~Poppet

CF

I am often asked what cystic fibrosis is, and I never know what to say, with out terrifying people of the cut and dry truth. Which I try to avoid lol I do like having friends. POTS is less scary to talk about because it's not as life threaten though it can be. I've been asked to speak on it today and tho I know all about it, in ways only I or "one of us" can understand.

CF is crappy disease that affects the entire body, my lungs, my heart cause of the lungs, my digestive system, it can affect my liver and kidneys as well, oh and the pancreas!! It's a disease that effect the cells in which chloride and salt can not swap "chloride shift problem." It is a rare genetic disease. It's crap if you ask me. Since the chloride does not shift right my mucus becomes extremely thick. I can not move my mucus with out thinners. My lungs are pretty damaged at this point, it's very hard to get air in and at times impossible to get air out, I am dependent on inhalers and at times oxygen. See scary!! Who wants to hear "my body doesn't know how to function so my lungs are slowly being destroyed" yes u have  I said that to people before. I get this look of horror. But it's facts of life with CF. I eat constantly because I can't break down food properly or get enough calories because my body does not comprehend how to absorb it, well it can't because back to that mucus again. Yes it's everywhere in the body, for you "normal" people it acts as a lubricant for me, it's a nuisance. See why I call the disease crap??

No one wants to hear the sad truth about CF, though it's a fact of life, crappy fact but a fact none the less. This is why I never know what to say. I don't like being known as the girl with CF, I much prefer the weird crazy girl with tattoos. Or the chef that her Grandma just doesn't "get" lol, I let the food "talk" and make what I think sounds good then boring all recipes. The girl with such a passion for music it plays constantly, even while watching tv, unless I like the show then well...

Yes my life can be scary, confusing and seem crap, but it's not that way at all. Because of CF, POTS, MCAD and even my food allergies I am truly blessed beyond belief. That's who I am, that's what I want people to know, you can make the best out of all this and lead a beautiful life.

But I must go for now
Love Y'all
~Poppet

Blessed

I am not sure where to start haha things have calmed down a bit since last week thought my heart is still going to a bit crazy, I am not sure if it was from the stress, missing a few doses of Mag, which can drop my Potassium, or both.

But I did get out of the house some. Which reminded me of quote, "I am truly blessed with cystic fibrosis because with out I would not meet the amazing people in my life." I am not sure who quoted this but I am sure I found it on pinterest if not google lol.

Anyways... I met this lovely family this weekend and if it wasn't for my CF I would have never met them. It is so nice to meet such lovely people in this crazy world, people who truly care about others. I love meeting people that gets whats going on in your life, its very rare to find someone like this, but when you meet them you realize what a blessing such a terrible illness can be. I won't elaborate more on this, I don't like posting about others with out there permission.

There are many others that I would not have in my life it wasn't for these crazy illnesses. Not only CF, but POTS to. Thru out these past couple of years, I have become friends with many wonderful people I would not have met if it wasn't for this illness. Half the people I talk to would not be here. My Pixie Momma, my sweet Angel K, Batman, my HU family. Sif has been here for a long time but she proved people stick around as did a few others. I can not imagine life with out these people.

I started talking to my Pixie Mom, when I found out I had POTS, I was not sure of the diagnosis but I had posted something on FB about all this and we have been close friends ever since. She has spent countless hours talking to me and becoming a huge part of family over the years. I am not sure I would have gotten thru all this with out here keeping an eye me, even thru the net!! I love when I can sit and chat with her and catch up on everything going on and she has never once let me think I can not make it thru all this. Same with Batman, constantly makes me laugh and assures me I can make it thru all this. Never lets me so much has think I cannot make it thru this and always finds a way to keep a smile on my face no matter how rough this life gets. Life can't get pretty crappy when it comes to these diseases. Its a crazy life, in and out of the hospital, multiple heart and lung issues. Reaction after reaction.

My sweet angel?? One night my phone was dead, no charger, admitted to the hospital. She chatted with late at night so I knew someone cared. She pushed me to get better to make it to Nurse Pinning!! Which I did lol, I got ready at the hospital but i made it!! She still checks up on me and encourages me to this day. She keeps reminding me I can come see her, the way Pixie mom does. And that alone always encourages me to keep pushing and to never give up. Yes my local friends do the same, but its nice to know that these people love me just the same.

My HU family?? They consistently help me and Wonder Woman with all the stuff that goes on in my life. They always come with smiles and hugs and pop in to see whenever they can. They are also the one's that allow me to teach students about this crazy thing I call life. My life.

This is why all this is considered a blessing. These diseases, this life, have truly blessed me and some days I have to stop and go this is why God gave me these diseases, and thank him.

Until next time,
Love Y'all
~Poppet

Why I have not been on

I'll probably delete this but,

Sorry I have not been posting much and pretty much negleticing this thing, Dog Dog had not been doing do to good and i was woken up at 7am yesterday been told it was time to make the call. She needed way more then the internet does as did Wonder Woman. But we are not gonna make this a sobbing mess, though I am sure some of just read this and burst into tears.

Dealing with grief, I have also had to deal with many health issues, which usually means Grandma was pulling me away from the sunroom to make sure I am not in the hospital as well, I had horrid lung issues around her, and the stress of course triggered my MCAD and I was on a lot of Benadryl and oxygen. Unfortunately stress is an MCAD trigger and its just a bunch of heart and lung problems with hives. Bunch of crap!! Tho we can all learn something from this sweet girl I called Dog Dog.

Compassion!! Most people see the girl with IVs and oxygens and sometimes my face covered to protect my lungs. She saw the girl that throws her ball and fought her to get it, she saw a friend, and when I didn't feel good she laid her head on my shoulder and kissed my cheek and brought me her favorite toy, as her way of saying I love you. This does tie in with unconditional love. She has me when I could go outside with her jump on the trampoline and play. She still loved me when I could not do that, and eventually I could not go in her room I had to see her outside, and she still loved me none the less.

She never judged anyone, she always saw them as a friend, even though she was judged cause she was quite a big dog (most people were terrified of her) and it never bothered and taught them she was a kind gentle soul and not to judge her by how she looked but the kind soul inside. We are all judged by are looks, what is wrong with us, are personality. When thats why we should be loved the most. For are "flaws" that define us as who we are and who we have become, and more importantly are souls. We may look tough or hard but some of us are quite kind in are souls.

But before I get upset I am gonna jump off of here, I'll give you a health update later.
Love Y'all
~Poppet

:-)

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~

Somedays people remind me of what I use to love to do. Well "use to." They talk to me and ask if I remember how much I use to love swimming or amusement parks?? How much I loved being outside or on the water... Well, I just remind them nothing has changed. I can not tell you how many times I text the All Father and ask him to take me on the boat, or how many times I ask Wonder Woman to take me to amusements parks. And swimming?? Well I have a line in my arm. I can't get that wet and public pools are littered with bacteria and germs. Yes I know chemicals are there to but GERMS, thrive there and in heated pools?? Well it bread the pneumonia bacteria. I have not changed at all as my soup boils over. I also can not tell you how many times Wonder Woman reminds i can not do concerts (heavy metal, classic rock) because people smoke and the heat. Not to mention all the piro on stage!!

Nothing about me has changed, and when people ask me these questions I have to stop and go "do you know me anymore" nothing about me has changed, my love for life and adventure is still here. If you'd let me, I would hop on an ATV and let me loose in the woods. These are things that I still love to do. I adore being outside, and that girl is still in me and I just wish people would realize this at times. Then I have to stop and think. The people that truly love me and know me, knows my love for the outdoors is still in me. That there is no better feeling then the wind in my hair, the smell of ocean, or the rustling of leaves in the wind. I am truly thankful for all the time my parents spent with my outdoors, and part of me thinks thats why Wonder Woman made a deal with me to go see the ocean while I was in SC. I can sit for hours on the beach, just listen to the waves crash the beach.

Nothing has changed, and every chance I get I go and do what I am able to do. My spirit and soul will never change.

But my soup is done, until next time
Love
~Poppet

Vacation

I am sadly home from vacation, though I am happy to be back to my kitten, grandma decorated my room for me while I was gone. I had asked her a few weeks before I left if she would put dry eraser shelf paper on my door so I can draw/write on it. Well she had it everywhere which was awesome. But back to vacation. I do miss getting up and sitting by a pool, I miss the nice area to do my makeup, and the short walk to the beach. Though I do not miss the silly bug that bit and gave me an allergic reaction.

On my last day there I had met a lovely lady, who had introduced me to her family who has POTS. It was really nice knowing that there is someone out there with my disease and knew what I had  gone thru all these years. It was also nice to see someone have the same symptoms as mine. Had a similar treatment. I also found out the one knew some one that was amlost 50 with cystic fibrosis. Which also gives you hope. I really have not been so relieved to talk to a stranger in some time. And though I come off at times as very closed off I am actually a very open person. You just show I can be myself around you. I had met them after I locked myself out of my room and intern the pool (the horror) so my SPOT was open. OMG I was off to go out with Wonder Woman and Dr Dean for dinner and someone was in my SPOT (yes I am that person). I had sat down to read with a full bag of saline, and she had asked me what I was doing and I explained my disease and she asked if I would meet everyone else. Of course! lol

I had gotten to talk to them for a bit, and she had asked about dating. Which is quite a pain when it comes to being chronically ill. Being that I live with IVs, oxygen, PT, treatments, and some days life kicks you down. I had explained my current situation and why I had broke up with some one, my feelings for someone else who had consistently been in my life. It was so amazing to here from a stranger that I had indeed made the right decision, and I should persu the other person. I glad she understood what I was going thru and had a similar story as I did. Some days the relief of not only knowing you made the right decision but someone like you in the world is what you need. But that's not all I learned from this vacation.

I learned how to travel. OMG what a pain at times. If you have a disease where you lungs get congested. I know people with chronic infections can be an issues on top of CF. STOP AND WALK AROUND. 8 hours in a car with out PT, Vest, treatments does take a toll on your body. Your lungs back up, you get a fever, you get sick. You need to more then just walk to the bathroom. You need to be up and moving around. And carbs do not keep you "OK" for an extended period of time with POTS, you need a lean protein base. And PB does not count the way I thought it would .