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