Angels Among Us

My friend Tater Tot who we are changing to Black Widow or Poison Ivey which I think we will go with Posion Ivey cause it's her favorite even though I am sure she's a villain. Tho in real life shes anything but!! She made a video to document my life, with CF and POTS, to get awareness out on what the disease is and what a person with the disease looks like. *Gasp* they look normal?? SHOCKING. But she asked me what song I'd like to use. I looked at Wonder Woman and was like oh gosh what song would represent this insanity!! I was going thru Bon Jovi, Christina Ricci, then me and Wonder Woman have always loved a song by Alabama which have been listening to a lot lately. So we chose the song Angels Among Us. It's beautiful!! It's a song about when we are in need God sends Angels to us to guide our way "someone up above us" is the words the band uses. It goes to talk about a phone call from a friend, a strangers helping hand, or just someone there in your time of need. 

I sent her a bunch of pics that I could find that were health realted, I think I sent her almost 10?? emails. I also said she had free reign of my FB so I had no idea what to expect when I first got the video. When I first watched I cried. Each pick represents something to me, and the ones she picked were amazing. 

I remember the guy who was in my room all night doing everything he could to get me to breathe. I was in respirtoray distress and every breath was forced and a struggle, the mucus in my lungs was solid, and he truly spent the night with me and saved my life. I remember texting Dr Dean and her telling me he was an angel. He was there the entire admit, and he was the reason I was breathing OK, he got to know me, and was a big advocate that night to help me. 

The pic of wheel chair, and the nurse who dried my tears, and Wonder Woman wheeling me down to get GOOD coffee. The RT that shares my name that worked endlessly during the day to keep my airways open, I see the nurse in the ER that takes on an extra room because she knows me, I see the doctor drying my eyes because my airways are shot and I just wanted to be home for Christmas. I see friends that have never left my side and sacraficed so much to help me lead a quality of life. I see the nurse who was in charge of a full and busy ICU who took the time to french braid my hair, i see the doctor the took time to visit me everyday when he was not required to. There are so many memories that came flooding back who made a huge impact on my life, Who put their life aside to be there for me. Who spent countless hours keeping me alive. These are people that have selflessly been there for me. Please don't say well they are nurses thats what they do. Because no one has to stop their busy schedule to braid your hair or hold your hand. No one has to stop there time to come sit with me they chose to stop there crazy life for a moment of time to make sure I am ok. Drying my tear, brushing my hair, holding my hand. They are truly my heros. Real life heros do not wear capes, the wear scrubs and smiles. And often times they are people God sent to me to give me a better life. 

Love Yall

~Poppet

Hair Drama

I guess I need to do an update about my health in general, which is never a fun thing to do because its never anything happy. It's no secret I have not been doing so hot. But theres things that have been confirming this and not sure where to start to grab my life back. And what started all this "coming to terms" thing is my hair. Yep thats right my hair.

Well because I have POTS i have a PICC line in my arm and I can't get it wet so I wear a shower cover to keep it dry and where its located makes it impossible to bend my arm the way I need to when it comes to wearing a shower sleeve and washing my hair. Then again standing up that long to shower and wash my hair is not really an option as my heart rate gets way to high. So I usually wash my hair over the side of the tub, and it has been rough washing it with my lungs in general but last time I washed I couldn't catch my breath in a serious way. Send "help" text to Wonder Woman, to get me my meds. She finally said we can't do this anymore I can't have you like this so I am going to wash your hair by the sink. I said OK cause well being in that state just washing my hair is a lot to handle. But I am super picky how my hair should be and how hot the water is and how pumps of shampoo are used. To hot of water running over my head triggers my POTS. Anyways, today she didnt do it right and it needed to be re-done which started us going back and forth lol. In the end my hair did get clean!! I admit me and her go back and forth a lot because I get overwhelmed and then she gets up set because I am upset, and then it just goes down hill from there. You REALLY got to feel bad for her she really does put up with a lot!!

I was also supposed to go see Tater Tot this week to see her and her inlaws cause I love them all. Well my lungs couldn't handle all that. I need my oxygen to much and getting up and getting out is a lot of work. I can't do as much as I used to be able to. I also getting a lot of messages. Hey call Superman!! This isn't good. I have also had a lot of pressure in my chest and it affects my line especially if I am not on oxygen!! Which I am not as compliment as I should be. Though I wear it a lot theres a lot of times I take it off.

But I guess I need to get off here.

Love Y'all
~Poppet

Rant

I was just bugging Wonder Woman who was watching Divergent, which I can not stand the movie or the book. I hate it. I am sure I mentioned on here that I hate it before. Wonder Woman however loves it, and was sweet enough to buy me the books to try to get me into them. Which I read them all!! The premisis of the books is that people who are genetically different are "bad" (in the book and movie they are saught after to be killed) so we they have an equal society, and the main characters fight back for an "equal" society.  We got to discussing this and our feelings/opinions on it and she understood why I don't like them at all. Its my reality. Heres why...

 My genes are damaged and I am a young adult who relies on makeup and tattoos to look alive. To have a bit of color on my body when I can bearly get oxygen in my lungs or my heart rate is low enough. My lungs are so bad, I had to have Wonder Woman get some of my meds today and swap me over from my tank to my concentrator. Because I make myself look good before going out which takes FOREVER, I am harassed, stalked in stores, and people strait demand why I park where I park, why I am on oxygen and "how dare i take advantage of the system." I am constantly dehumanized because of what I was dealt. I am treated as if I don't have feelings and society would be better off with out me. I usually handle this with sarcasm and not violence. But the premiss of this book is "we need to hide you to protect you." I often feel that way, and have been told so many times to my face that I should just never leave the house so other people can make poor choices. We condemn people who are genetically different with out giving them a second thought.

I am not sure where I was or what I was doing but I was with Wonder Woman and we were out and I told her that I will fight for equal rights for the disabled, and I hope in my legacy someone will do the same. Someone will fight to get the word out we are human to, we have feelings, and behind the oxygen and makeup, I am a smart woman, with a passion and a drive. I love food and creating food, and want to make a safe place for everyone to eat with out worry. I am worthy of love, friends, compassion and respect just like everyone else is. And so is everyone with a genetic disease, or "genetically damaged."

But the kit cat is getting ansy and causing trouble because this is her time. Who is now walking all over me!! Love you rubes!!
Love Yall
~Poppet

Lovely outing

Not much has been going on, though I did make it to the event, which was amazing!! I am so trying to talk Wonder Woman into ONE more show!! It was such a wonderful show full acrobats, contortionist, and all sorts of wonderful things. I had such an amazing time and I got to hear a live drum solo which I haven't heard in YEARS. He reminded me Peter!! OH MY GOSH!! If you don't know when I was a LOT younger I was a drummer, metal to be exact and Peter was my main influence, he played with his soul. Nothing moves me like music. I listen to it all the time, it speaks words I can't. It so much easier for me to go "listen to this" then explain how I feel aside from this blog. But other then it reminded me of Peter or KISS in general in many ways, it was a whimisical story, they had bueatiful costumes and painted faces, there was day of the dead, it reminded me of Alice!! I looked at Wonder Woman and told her I finally made it to Wonderland!! Then the clown who told me my hair tasted like blueberries (its teal/blue) he also got the confetti out of my oxygen for me which I didn't know was there. I ended up getting skull shirts because as much as I wanted a matching coffee cup with her, I always end up losing my matching ones because my stuff has to be cleaned different from hers, and I always lose my cups to her (not in a bad way) because they get mixed up which is a risk for me... yeah...

I also found out stairs are my worse enemy!! There terrible!! Then I was out in the heat for a bit (not more then 30 minutes) which flared my POTS a bit. My heart was out of rhythym. But once I was in the shade I was fine because there was a beautiful breeze of there. Which I got pics of us together. Which made the heart issue so worth it!! I have very few pics of me and Wonder Woman she hate pics of her which I respect it enough not to push the issue TO much. I also got a few pics inside the AC tent. Which I found no matter if I am hot or cool, I am having issues with getting enough oxygen but it's not to concerning yet. I am usually always with a nurse, so the worry isn't there to much I know I am in good hands at all times. I also freaked her out, because I had water dripping on me, and my purse was dry so my reaction was PICC!! It's broke OMG. Turns out it wasn't but there are stories of people breaking the lumens on them so I am now required to carry hemastats at all times lol. You really gotta feel bad for her at times. I am such a stress for her. She has to worry about everything at all times, she has to be my yellow canary, she has to see things before I do to protect me from things around me, because I refuse not to do things just because its hard. So what?? Life is hard doesn't mean you stop doing what you love if its not puting your life at risk. Like concerts = tons of smoke, which can kill me, soooo I can't go anymore. I want to break the stigma that people who are chronically are "not human just sick" so they shouldn't have the same quality of life as someone else. Will it be harder to have one?? Well yes. But when people gawk at you and at times harass you (didn't happen yesterday) it makes it harder to go out. It makes it harder to comfortably go out, because your cosntantly attacked and put down. I refuse to allow the next generation to go thru what I go thru, what people like me go thru, I will find a way to make it end. But until I do I will live for days like at that show. Full of kindness and joy.

Love Yall
~Poppet

Health update??

Well I figured since Tater Tot started and fundraiser for medical bills I'd give a bit of a health update because I offered to put my blog out there so people can see what it really is like to be me. Not that I always give much details I do put it out there that my life is not sunshine and roses the way people think it is because I choose to smile and make the best of it. Because I refuse to let this disease destroy my spirit.

Well it goes like this. These past few weeks have been not so great and has been getting to me. I have been stuck on oxygen even at home doing nothing, and Wonder Woman has been helping me do things. She's helped make coffee when I assure it is to much effort, to stand there and push a button. I think that happened the day I went to the movies. Which I was short of breath on my oxygen, which was very noticeable, and that night I was struggling to breath and ended up on a couple of days of doxi... I am still on it, and I think I'll be on it thru Sunday. She has helped me dye my hair, and helped rinse it out. It's a lot of effort to do all this. I usually do not put all this out there because I don't want people to feel bad for me. I haven't been able to get back to where I was a few months ago, and I am always struggling to do things with out my oxygen. And its usually easier to do things with out but I am starting to not have that option there. I know my life is going to come to transplant one day because of the noticeable difference in how I function. Maybe they can try to fix the whole in my heart first?? I have literal whole in my heart (a PFO) not a figurative one. lol Which means I am not always circulating oxygenated blood, and I also have MRI proof I have right sided heart damage. Because of all the pressure that is put on my heart daily, and all the stress. I am at the end of my rope for medications and now I just wait it out. There are 3 locations for transplant but my lung function has to decrease a bit more, though we haven't checked it since last summer. 2 in state 1 out of state but I really am not trying to think to much about it since I am trying to focus on being in my friends wedding, it is my first priority, transplants are never guaranteed so it's always my goal to do things and worry about that later. Which is why my sweet friend is worrying about it for me, while I worry about her wedding. Its really how things go haha. I also have other things I want to do, and people I want to see.

My FB is also blowing up about me have a quality of life or it was, I really have not been on there at all. I can't handle it anymore. The facts are I really don't. People work very hard to help me with that. Which I am so greatful for. Which means I can focus on Taters wedding and really getting healthy. Or my healthy to stay stable. Which has been a fight. I get so frustrated because I am always connected to something or always short of breath and it gets really frustrating and really over whelming. I will fight to do things I want to do. Even I if/when I do end on transplant list I will do everything in my power to have the life I want. It does get over whelming and a lot of time its all about coping. Putting a tough girl face on, and unwillingly letting people help me when I need it to help preserve my lungs. Which is a huge defeat for me but I am so blessed that people are around here willing to help me.

I am not where I want to be at all, but I am where I belong which I will accept. I also will not let it stop me, I will be out there doing what I love with my oxygen and my meds. I refuse to be stopped, I refuse to let this disease get the best of me. I will do my makeup, my hair, look healthy, and let people help give me a quality of life. Ima tough girl, I can handle this.

Love Yall
~Poppet

Misunderstood??

Not much has been going on lately, or well it seems like nothing has been going on but I feel like I am always doing something. I haven't been feeling so well lately, I have been short of breath a lot and on my oxygen but I mean it only stops me so much. I have gotten out a few times here and there and we moved the Wii into the sunroom so I can control the air/heat and keep my body controlled and not going into some POTS flare do to heat. Not everyone around here completely understand POTS and that I need cool temperature controlled areas. I also recently found out how different Lego Pirates of the Caribbean is then the DS one!! So I am sure hours will be invested into this game. Probably weeks.

But moving on haha. So back to trying to stay as normal as possible I do get out some. And recently Wonder Woman has to get her eyes checked out and after my B12 we went to get her eyes checked for new contacts and I didn't think we'd be gone long (and neither did she) so I didn't bring any snacks like I normally do and I was already visibly short of breath and took some salt pills to keep me stable so she didn't anything that would take a long time so she could get me food. When we got home we tried to explain to someone that "just 20 minutes" can make or break me. In this case it would break me. With POTS I need a LOT of salt. I control my POTS with salt, potassium and saline. Which I had only one of these and 2 grams really isn't enough. And pushing me can really cause a lot of damage. "She'd be fine, it doesn't take that long." Some days I really do NOT know how to make people understand that POTS is not a disease you mess with just like CF. Pushing my body that way could mean my heart STOPS so I do everything I can to uh not do that. I try to not let what she says get to me but there are days it does. Some people will just never get it. Yes I do have a habit of pushing my body because thats the only way I can see how far I can go. Yes Wonder Woman is usually 5 steps behind me telling me to rethink my actions.

I also had to explain to Sif today that I really haven't been getting on FB because people really just do not get what I go thru and tend to be not so nice,  or they misunderstand whats going on and tag me in things that are just false which makes people text me and ask if I am ok. I actually deleted my FB apps and just got on my messenger. I get on FB to farm only. There is no need for added stress in my life alls it does is make me sick. I also figure if people are that interested in finding out what going on they'd text or message me. But so often people use social media to assume what goes on in my life and I had spent way to much time clearing things up I just decided to walk away for now.

This blog turned into a vent session of people that do not understand or "get it." How do I deal?? I talk to people who understand me, or know how to deal with me. Not every one will get it or understand sometimes people just want to be nosey and we have to decide who to trust with the craziness and emotions of all we go thru.

But I must get off here and get heat on my lungs its been a rough day. But I got gold eye shadow!!
Love Yall
~Poppet

POTS update

I haven't talked much about my POTS lately. My CF consumes my life at this point. I am always finding new ways it has taking a toll. A huge toll but we will get back to that another day. 

This is a POTS awareness blog but I haven't really mentioned in depth lately just in passing because its pretty much under control. I am not saying that its not still debiltating or not there daily because it very much so is. My heart goes in and out of raining. Ive come close to fainting a few times. One was my fault forgot to take my salt. Also this summer has been very hot so far, and  I go out and think I dress cool enough come home to be dizzy and have a very high heart rate because my body simply can not cool down on its own. This is WITH Wonder Woman blasting the AC some days it just doesn't cool down quick enough for us to get where we are going. So I have upped my saline for the summer. I am doing an average of 3 liters a day. 

Which I controlmy POTS with saline, salt (and LOTS of it), diet and potassium. I also get b12 shots but its for my rediciously low levels. And not because I am vegan it was low long before I was vegan. Though the Vegan diet, as well as being gluten free, has greatly helped my symptoms of POTS. I eat small meals thru out the day, and I eat a LOT. Salt everything I eat and no gluten. I found that more your body has to digest certain foods, the more the blood in your body is going to your intstines. When you have low circulating blood volume this gets problematic very quickly. I also spoke with my doctor about this and he said if it woks for me then keep up with it. POTS isa very underresearched disease, so it takes us as patients to learn how to cope and control our symptoms. Exercise is suppose to help as well but it has been increasinly hard for me to ezercise but not because of my POTS. 

I usually only struggle with my POTS in the summer and ONLY when I go out. I can not control the heat or how little my body sweats, i drink LOTS of water, i drink iced coffee (unless i go see my friend and I go strait home) and I eat cold fruit. It is vert very important to stay hydrated. Compression stockings did not make much of a difference for me, like they should have though I do wear them on long days but I found they are way to hot. And for me I also can not take cardiac medications or the "serotonin" drugs not sure it they are reuptake or inhibitors but they made me 100 times worse it was terrible. 

POTS like CF is a very patient based treatment. This is what works for me, this is what i fought very hard to get to help me get my life back to the extent I could. Each patient is different. So your treatment may be drasticalyl different then mine. Or this could help you as well. :-)

But I must get off here for now I need to get this lungs taking care of

Love Yall

~Poppet

Frusterated

I had planned on writing an update on my POTS and how I have learned to control it, thru meds and diet then I walked out of the store today and right into someone who was smoking. I had NO idea that person was even there let alone smoking, so there was no covering my face. I immediately started to choke, cough and wheeze, I called the person a bitch while Wonder Woman went into nurse mode. I took a cocktail of meds, came home and did more. So all in all, I had to puffs of combivent (albutaral/atrovent combo) prednisone, benadryl, and came home and 2 a double dose of albutral neb). Then my heart started to go out of rhythm, so I have been sitting here trying to get everything under control. All because someone was smoking by a door.

Before I start my rant, if you smoke, that is your choice but be considerate of other people!!

When people smoke outside doors or in public areas where they KNOW a lot of people will be gathered it is inconsiderate to others. It does not just affect me but other people who also have lung and heart disease. It affects children and infants who lungs are still developing. And here is the thing, you normally can't tell me from any other person except when I am on oxygen. Not everyone with a disease that is affected by smoking can be noticed. And we deserve the same rights as any other person. We also deserve the respect. And not only does this affect the person whatever that has the disease but there close friends and family. Now they have the burden (to my family and friends i know you do not see me as a burden) of taking care of me. Did she get meds in time?? Do I need to take her in?? Does she need further medical help?? Does she have enough oxygen to get her to treatment?? Can we make it in time?? I also can see they pain in their face of complete helplessness and anger when this happens to me.

Then being a normal young adult I posted on FB what happened and how frustrated I was, since I had just texted my BFF Tater Tot I was doing ok. The only thing I had asked was NOT TO SMOKE OUTSIDE DOORS. I didn't ask for a push of making smoking illegal, I didn't ask for it to be banned in public, I simply asked not to do in doorways where you people going and out of stores. To which I was informed well maybe I should find a new place to shop. In a very polite (stop being shocked) way I said, I am not asking for anti-smoking, I am asking for it around doorways to be stopped, and if I just stopped going to places where people smoked outside doors, I would never leave the house again. Which is not an option. That means no grocery stores, no farmers markets, no going out to get meds, and I already do a lot of shopping on line. I didn't tell her that, but I did tell her I almost never go out by myself anymore because of people who smoke. I did text a few friends, and others sorta seen the post pop up on there feeds and came to my defense.

It makes me feel that people who have lung and heart disease do not have the same basic rights as other people. God FORBID I ask you not to smoke in front of a door. I want and deserve to be able to leave my house with out wondering if I am going to die today because somehow has to smoke. And no that is not over reacting. Lung disease can KILL people.  Asthma alone can KILL people. Now add on to that MCAD, CF, or any other form of life altering lung disease and it is a deadly combination. I have mucus in my lungs, plus MCAD, so theres not much room for my lungs to swell to cause my airways to be completely BLOCKED and with MCAD it can trigger an "attack" (for lack of better words) and cause my to go into a life threaten reaction. Not to mention my POTS which all those meds put me into a dysrhymia.

I am not asking for you to stop smoking, I am asking for common courtesy you would give any other person.

But I am gonna hop off here and convince Wonder Woman to help make me a smoothie of sorts.
Love Yall
~Poppet