Thoughts

Being raised by a nurse, we always focused on quality not quantity of life. Though it was never spoken out right, growing up I never heard much about living a long happy life, but doing what you love no matter what. She even moved me 12 hours away from her to let me do what I love. She always shared experiences with me, we went to concerts, amusement parks, museums, the beach, and she still makes a point to do things with me and help me do things I love. The hardest one at the moment is traveling but she still tries.

More so then ever she has been helping me have a quality of life I do not really have, while still being the brain of things. I have always had this "lets do it not think it thru" way of living. Do I want to do it?? Yes?? Well I will find away!! So she's always going "its hot" lets wait till fall. "That's water you have a pic line." "That has a heart warning." And the best one that has lasted 28 years "what were you thinking?!?!?!" Yeah, she has had her hands full for a long time now. But off to the point.

The point is, so many people think they have this long time to live. They have years to get things done. There is always tomorrow. There is no guarantee of a tomorrow, thru God's grace we wake up every day. Life is a truly wonderful thing when you have wonderful people around to help you lead the life you want to have. So often I here "I want to do this but its not feasible" and I always always always ask "why isn't it??" and if they don't give me a good explanation, I remind them laying on the couch gets you no where. If you have the ability to experience life and love life. Do it!!

I remember last year I went to the beach and I was so happy to be there I just sucked it all in. I took picture of the waves, and the seagulls, and i just stood there breathing in the salty air, listen to the waves crash on the beach. I took almost 100 pictures. My friend didn't quite "get it" or see how amazing it truly was. To him it was just a beach. To me?? It was where my heart belonged. It was feeling the sand on my feet, my hair whipped around, cool water between my toes, seagulls singing in the sky.

I drag Wonder Woman to all these museums and she makes sure I get to see every part of it. Still as an adult because I love animals, I love science, and she sits and lets me take pictures, she lets me drag her to 3 different areas, she lets me smile at the oddest things. I am so the girl that stops by the bushes at stores to watch dragon flies because they are my favorite creature. I don't just pass it by.

So what I mean, experience life, enjoy life, get out and do things, find what you truly love, what your heart desires and DO IT. Don't let harsh words stop you. Get out there and love your life!!

Love yall
~Poppet

Update: Longish

This past week has been really rough on me health wise. I am starting to realize how week my lungs have become. Wonder Woman has faith I can strengthen them but I am not so sure. It's been this way for almost 2 months and I normally don't have issues like this for months at a time. I have to have strong lungs by next June to.

But this week in general. Well I went to "work" with Wonder Woman and I could feel it but I didn't use my oxygen because I was in a cold office playing on my iPad and I wasn't visibly struggling and as I have been dependent on it in the day at times to I just wanted it off for my poor nose. Not sure if I put on here on but one day it was so bad, I had to have her help me make dinner. Yeah I am NOT the easiest person to deal with in a kitchen. I am a Chef with food allergies (thank MCAD) so I am pretty controlling which is crap when I really do need the help, she yelled at me only once though. We also had a terrible storm come thru one night to and I was so symptomatic that it woke me up and I was dizzy laying flat (terrible on my lungs I know but my heart wasn't tolerating this weather either) if I had so much as moved I would have passed out laying down. POTS for you. A sudden drop in barametric pressor will make my instantly symptomatic. Storms in general do, but when its a sudden hit I am done for.

Which brings me to today. Well, I had plans for lunch today, and since Wonder Woman promised me mall trip we went there to. Which is never good I am addicted to Michael Kors!! And she bought me "Alice in Wonderland" today with all of his other work!! OMG heaven!! BUT lets back track a little.

Well as I said this week has been rough, between POTS and my CF, well I am surpirsed I got out today. My mucus in my lungs was solid so I decided to order jalepenos on my bagel sandwhich to sorta break it up a bit. It works wonders on me for some reason. So then I was sitting in a full restaruant not able to cough and clear my lungs. I looked at Wonder Woman was like uh problem?? Which is the WORSE thing to say when you have food allergies and thought I did tell them it still can be and issue. She goes what?? Im like the jalepenos worked and I cant cough. The nurse comes out in her big time cause of me lol and she gets concerned. I do realize that not everyone is use to CF or is a nurse and gets grossed out so of course she starts laughing!! As soon as I left I had a horrid coughing fit but it helped. So we went to the mall and parked where we ALWAYS park.

So we go upstairs, and stop at MKs and I see a shirt i LOVE but didn't buy I had to drop way to much money on meds so I had to pass and I need to get dry shampoo because I can't always lean over the tub to wash my hair and can't stand in the shower cause I can't get my PICC wet thought I do use a shower covers. Anyways, Wonder Woman needed to go to Barnes and Nobles so we walked the length of the mall which is never usually a problem. I was feeling it a bit but nothing concerning and she always lets me sit and rest if I need to. And of course the section she was looking for was on the upper level. I assured her I could walk up a flight of stairs. I use to do it all the time. She gave me the option of leaving the store hitting the escalator and going in to that entrance. I said no I'd be OK and walk up stairs the way i normally do. BAD IDEA. Even slow even breaths with each step didn't work. I was so short of breath by the time I was up there I felt like I would collapse but I gained my composer in the music section. I somehow surprised and got a Wonderland book lol. Which I needed a new book anyways I am running out of Robin Cook books and finished the Hunger Games series (phenomenal series the 1st book starts a bit slow though) and the Divergent series (hated it).

I did get home in one piece tho!!
Since this is a bit long I am going to hop off here haha
Love Yall
~Poppet

Today

Today was just awful. Plain awful. I actually slept last night after a week of a compition in a game I play. I came in second and got first prize (top 5 won).

Actually sleeping means I wasn't up and down all night, and Rubes the cat got in bed with me and I felt her press against me and I remember waking up enough to roll over and curl up around her. Well I was so tired from being up all hours of the night with the game and lots of benadryl I slept that way until almost 5 am or a bit later. This is unheard of for me to actully sleep that long and/or lay flat to sleep that long, usually wake up because I can't breathe.

So this morning I felt it. It took me over an hour to get out of bed. When I got up I finally I couldm't catch my breath. I thought nothing of it, warm days tend to get this way with me, dehyrate at night because I run out of water and won't go by the glass door at night because I watched a few horror movies lol and after a liter of fluid for my POTs whivh also helps loosen up or rehydrate my secretion to make them movable I am ok. So I just took my oxygen off went about my day as normal. Well nothing worked I wsa couighing and wheezing went and got Wonder Woman to beat my back for PT and just went to shower. Grabbed my oxygen and lost my breath. So we figured well its HOT so well just go get food and come home not stop by the mall. I havne;t got much better,

Wonder Woman offered me the recliner I call my chair and sleep in her room to tongiht. In her room since we hang out in there and watch TV or play video game I have a chair. And she offered to let me sleep in it tongiht I am so bad. AND I asked her to help cook me dinner tonight. Which I think she deserves a saint award for. I was sitting in the chair in the kitchen and I would try and scoot it around and not get caught because I get let go of control in the kitchen. Its my natural habitat. It was easy mashed taters. But uh "until its done" or "splash" is a changing varianle per person lol but she handles  it well lol tell me to shut up and stop moving lol

My lungs do worry me. Oh gosh days like today remind me of how serious and how bad my lungs really are and are going to get. Which can get very scary and very over whelming. We are at the max of what we can do at this point and I am on all my meds. So we just pray for a better tomorrow. And we take time to realized how blessed we are to have a nurse that sacrafices everything to give me a quality of life I would other wise not have. Why we call her Wonder Woman. Truly amazing and selfless person.

But I guess I need to get comfy
Love Yall
~Poppet

small update

I guess I should update this while I am waiting for my game to do what its doing while I sit here and listen to Wonder Woman tell me her tattoo is peeling while mines not... Blogs need emojis!!

Nothing big has been going on, I have been waiting on a call back for TPA. TPA is a de-clotting agent for lines, and well other things but this is specific for my line. I also have been battling the heat in doors. Still not brave enough to sit in front of the AC, being that the AC is very old. It's been there since Grandpa made the sunroom, and well thats a long time. So I sit in Wonder Womans room under a ceiling fan driving her mad. Or she's been making me think. "Remember when you found this medical museum... what was the name it??" uuuhhhh hmmmm.... I think it's a german medical museum. Really cool well for us anyways lol.

I still have not got in touch with my one doctor. Not the TPA, but one that wants to prescribe me and med that is a shot every day for 2 years. I was like uhhhh, I can't give myself a shot... He kinda looks at me and goes "after all you go thru" yes I can't even give myself epi. I can't even just no. I can't push something into my own skin, it's a mental block!! Oh gosh that is terrifying. But I am willing to try it I just need to get in touch with him. I guess I will try again tomorrow morning. As I have to brave the heat in the next day or so anyways.

So there's really much that has been going on, well nothing worth writing about as I've been staying inside because of all this heat!!

Well I'm gonna hop off of here
Love Yall
~Poppet

Update

There are many random topics floating thru my head so I guess we shall see where this will go. It might be as random as I am or it might just be one topic...

Lately I have been realizing how sick I really am, or well how different I really am. I am not sure if it's my health has decreased a bit, or that I am just finally accepting/realizing how different I really am. I can't handle the heat, I can't walk a short distance outside, I have to sit down some days walking the mall on oxygen, it takes everything out of me to hang out with my friends if we are doing more then hanging out watching movies. A lot has happened?? Well maybe.

I walked 3 blocks in decently hot weather. It wasn't overwhelming. I could feel it in my lungs that it was a stressor but I didn't think much of it. They were small blocks, but it's not something I can do. Then after even going shopping I need a days rest!! This has happened on two separate occasions. One with Wonder Woman, and one with friends. I am sure it's the heat that take it out of me. Unlike most, I don't really sweat, the only time i have broken out in a "sweat" is right before I pass out. Which is my clue to sit down grab some salt (not really I put 2 grams of salt on my tongue with water and let it dissolve) and go from there. Most people (even Wonder Woman) will get off work and go out with me, for me its OK, i need to take antibiotics to open up my airways a little, and the anti-inflammatory cocktail. It's a mess. I had to miss going to work today because of the the heat index. Everyone missed me but understood we need to keep her in. Today was miserable for me, poor Batman got me bitching first thing in the morning lol (sorry) but I do admit he can handle me well which not many people can. It was so hot outside we couldn't keep the house cool. And I needed food so, Wonder Woman took me to the closest grocery store, well closest that I will accept. So I had to get ready, I couldn't take my oxygen off long, I could barely disconnect, I finally just broke down and took some steroids and benadryl.  By the time I got home I was just like "please help" and I had to heavily treat my lungs to just catch my breath.

I am doing much better now, but it took a LOT out of me. I need to learn to just go in my sunroom and sit in from of the blowing AC, which is probably terrible for my lungs. But at least I have Rubes for entertainment.

But there is some good things that have happened!! I got a new tattoo!! Wonder Woman has the same one I got to represent my battle. I use to tell you I go thru this alone, and no one goes thru this but me. But that is SO untrue. She and a handle of friends go thru this with me, since she's around me All. The. Time. she goes thru a LOT with me. So we got the tattoo to represent everything, and what's more fitting then my birthday?? She dragged me out to see a movie!! We went to see Jurassic World, and she;s all OPENING DAY!!! Im all "your crazy give it to the weekend" lol I am so scared of being around large crowds because I have no control over who smells what way and oh gosh be around someone coughing and it sounds like my cough I panic!! I also got makeup and to see my Bare girls!! And lots and lots of coffee!!

But Deadliest Catch is coming on so I need to hop off of here
Love Yall
~Poppet

Birthday!!

So to day is my birthday, which means I am a year older, but it also means I have been on home health for 3 years today.

Three long years!! I have been in and out of the hospital, I had more diagnosis added. But today is the day I was sent home after being in the hospital for 2 weeks, and had Saline at home for the first time. Wonder Woman took on the role of my nurse because she did not want someone else in the house when she could control the line herself. Which I am so much more comfortable with her working on it. But the down fall is I am so used to her working on it, I am so hesitant to have another nurse touch it. There are nurses that have earned my full trust with it.

That morning, I woke up and Wonder Woman came up there first thing because she had something going on that evening, and Sif was going to come up with cupcakes but I was getting out that day so we pushed it off to the next day. I had this horrid doctor coming and we had a stand off which lead me to tears since I had been on steroids for 2 weeks, which of course set off my heart monitor. The nurse came back in to check my heart which was fine of course, and gave me hugs, and told me she'd be right back. She came back with balloons, a stuffed puppy, and a card signed by the entire heart unit!! And the All Father came and got me to take me home that day!! Which after that my license expired while I was in, and I had all this crap to do to get a new license.

After that though it took, about a year to figure out the proper way to run Saline to control POTS. It's not like it was a cut and dry script. Most meds are not, but Saline is tricky to get at home because there was so much we had to do to get it approved because it was not and I don't think it still is a standard treatment. They took a huge risk to get me this, and I am more then greatful they fought to get me my Saline.

Which all patients can push for this if they know it works. All patients whether you read this for my POTS or my CF. (i have MCAD to but don't right about my allergies much) You have a say in your treatment, you can push for what you think is right. Build a repore with your doctors and speak up on what you need. This is your health!! Your life!! If you don't agree with your doctor or feel there is something else going on get a second opinion. My medical team, was built because Superman was my second opinion!! He's been my hero ever sense.

But I must get off here for now.

Love Yall
~Poppet

Stop dehumanizing the chronically ill

So it seems as though I have been MIA lately. Which I am half sorry for. Yes only half. I have been MIA cause Wonder Woman is off, and I have been hanging out with friends. Which has been awesome!!

But off to what this blog is about.

I am one of the people who loves social networking and pinterest. So I am always scrolling thru things and following people who are like myself. One thing that constantly comes up is "how to treat people who are chronically ill." What you should NOT say to them, ways you should NOT approach them, and how to treat them in general. Yes, there are guideline on to treat PEOPLE, with chronic illnesses.

Thanks to society we have been dehumanized. We are generally not approached as people, but a product that you can just walk up to. Since we can communicate though we are often demanded for answers. Scroll back and you can see how I am treated. Not by everyone. Not every person treats me like this, however most do. MOST, people will treat me as though I am just an object with out feelings, or emotions. They forget I am human. Yes, I understand people are naturally curious, I am naturally curious myself. But here's the thing: We are human!! And we should be treated as such.

I am sure you are reading well thats common sense. But for most its not. People often will come and offer us advice that is unsolcisted, tell us we are crazy, and it must not be that bad if we are out. That tell us how we should gain/lose weight, how they know someone whose recovered, and there best advice. They inform us if we are really that sick we should not be out. They walk up to us demanding answers and sometimes they inform us it is not our RIGHT to be out because what if we are contagious. What?! I am more likely to get sick from you!! No really this all has happened to me.

Which if you read this far let me clarify. Now if you walk up to me "hey can I ask you a question about: ..." "I am sorry to be nosey but can I ask..." wel yes yes you can. I am totally open to people talking to me. I am not saying everyone is, but I for one am. Now demanding "why are you on oxygen, you are to young to park here, or how dare you take advantage of using handicap at your age." That is NOT ok. It's not ok to tell people they will one day be fine. Its not ok to people they are over reacting. Its not OK to give me medical advice.

If you would not say to someone who is healthy you should not say to someone who is not. It's that simple. Again we are HUMAN like you are. I think thats the saddest part of all this. I have remind people that I am human, I have feelings, and you just can not insult or accuse me. We as a society need to stop dehumanizing people who are chronically ill or disabled. We need treat others with the respect we want and well deserve.

I use oxygen, but I also spend at least an hour doing my makeup to look healthy. And because of this people think I am not really sick because I appear healthy. No!! Just no. It's not that simple. Yes I take the time to look decent. But did you ever stop to think I spend so much time on my appearance because there no sense to look as bad as I feel?? That I just want to look beautiful just like a normal person my age would. Did you know that I am not my diagnosis and someone who wants to be fashionable and be who my heart desires??

The point?? We are human just like you, treat us that way!!

Love Yall
~Poppet