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

Bit long sorry

I often wander how Wonder Woman puts up with me. Yesterday I got lost in a bad part of town and expected her to know where I was with out street signs available as I freaked out for her to help yet I couldn't find street signs, finally found some and she finallly got me home. lol Apparently going around the block was a terrible idea. And the GPS was at home and my tank was almost empty.

Today she I had to deal with a not so nice person who made my hysterical. I am talking i can't catch my breath, chest hurts crying. Which is terrible for CF and POTS. I am still having issues with my breathing from this but I am ok. She had to calm me down so I could enough medication in me to help me breathe.

On top of this she is my nurse and is always the first person I call. She's always at my bed side, always at her phone, and always there to make sure everything is right. I often feel I need to protect from this life but there is no protecting the people that are close to you. You can't shield someone from the reality of your life especially those that care and can see right thru you. Now I have a few people that are that close to me but they usually get me after she gets the blunt end of me. Most times I don't mean to lash out but dealing with these diseases can be emotionally taxing. It gets quite difficult and when you are dealing with companies that won't help you or tell you what you need to do or tell you where to find policies at. She tends to get a lot of stress from me. Which totally isn't fair but I try to keep my emotions in check as much as I possibly can. But days like today that doesn't happen.

My life is not terrible it's just the opposite I just deal with health that likes to decrease here and there. I also have to get things strait just in case something happens and when the 2 collide together it gets over whelming. When you are chronically ill you deal with much more then just your health. You deal with so much more then your lungs and heart not working. Your systems slowly failing. Your IVs needing replaced. Taking medications on time. You also deal with loss.

Loss of what you use to be able to do, loss of friends that you use to have faith. Jobs. Freedom. The ability to do normal life things. You get harshly accused of things that aren't real. I often get accused of being anorexic or hormone imbalances when it's just I can't absorb most of what I eat. I get called anti social because it gets difficult to go out. You learn strangers are much more compassionate times then your own friends you've known for years that walked out on you. You find best friends become family and you find that new friends that find their way into your life can be much better then friends you use to have.

You find that people truly want to know your ok and you find people just being nosey and demanding. You get abuse in stores because you do not look sick because you spent hours finding the right blush to cover the sleepless nights and you find the right shade of lipstick to hide your purple tinged lips. You find a bit to big of shirt can hide your unintental weight loss. Some people will attack this and think your taking advantage of people and others will stop and hear your story. Wonder Woman assures me its there loss when they judge me and don't get to know me like I am some great person I don't see it.

Some see me as an inspiration which at times I find over whelming but other days I find my strength in that comment. You see I am just an average girl trying to make it this harsh world but also such a beautiful world that people do not stop and see.

Wonder Woman has seen every side of this. The girl that had no idea what to do in the face of a seemingly hopeless diagnosis and somehow found the strength to fight the odds. She has seen the tears, the pain, and the struggle. But she also see's me cry it out and pick it up and put myself out there to get awareness out. Sorry this is so long I guess I just needed to voice my frustrations to myself.

If you read this far. I right this to let people know they are not alone. We get a God awful diagnosis and feel there is no hope. We have days where we think this is the worse thing ever. I promise though it does get better and we have strength in those around us we just have to let them in. Alice said it herself though "I give myself very good advice I very seldom follow it." I guess I need to be more open with people.

Im off here though treatment is calling since I set myself back a bit with sobbing.

Love Y'all
Poppet

Update!!

I swear lately I have either been sick or busy. I am not sure I have felt anything over then "go go go" or "my lungs hate me."

I guess we will start with Thursday?? I went shopping with Wonder Woman because I need a sweater to go with my dress for Nursing Pinning. Not only did I have a tank top dress, I had a PICC to hide (protect). I walked from one end of the mall to another, with oxygen, and I had to sit down. Which is unheard with me on oxygen, it usually gives me the support I need to get thru. Unless I have a major infection it usually does its job. Not that day. Wonder Woman was only slightly concerned but we both just wrote it off as well I do have crappy lungs and it wasn't anything serious. Which I mean it really is not. I do not think.

Friday i just spent the day washing my hair and laying everything out for Saturday because early morning and picking out makeup is not something I like to do. Don't get me wrong I love makeup and won't leave the house with out it. Because it's one way I calm down and one way I can express myself with out the concern of "am i triggering something."

Which brings us to Saturday!! Nursing pinning. I was still struggling a bit but it wasn't serious. I had gone part of the morning with out my oxygen. I was just sitting at a desk while Wonder Woman does what Wonder Woman does and that save the day, whether its for me or someone else its what she does. So I make it over to the hall where pinning starts, and while I was waiting for one of my "favorites." I was hanging out with another friend I trust who also is a nurse, and was selling t-shirts with someone I never met and someone I didn't like. Which I know how to not like people and still be kind to them. Its the way it should be. I asked the one I didn't if she was a "beach" employee and she said yes, you were suppose to teach for me but something happened. I immediately new who she was and remembered what happened that month. Which isn't something I care to remember. Which I told directly and respectfully. That "something" was a major lung infection I was suppose to be admitted for, but couldn't be cause a family member had half her tongue removed and it was my responsibility to care for her. While getting up a 2 am for treatment, 5 am for manual chest PT, to get up at 7 to do more treatment and care for my family member. While Wonder Woman maintained work and help me to keep me alive. I was on antibiotics for a month strait!!! She never replied back. My favorite came and saved me!! lol Turns out she's a peds nurse and didn't grasp how deadly that could have been?? No really I know

So I sat down and someone asked me who I was since they never seen me and if I worked at the Beach campus, I said no I was Wonder Woman's daughter and I teach on some occasions as a guest on what life being sick is like. I always hide out in her office to make myself scarce when I need to. She asked about my oxygen, I explained my health, and she just looked at me and goes your lucky to be alive. No, really I am, I just wished she knows how true that statement really is. She maid a point to keep an eye on me to, knowing what all this meant. She also got to see me short of breath on oxygen as well. I also got to see some of the people I have grown to love over the years. Who I also found out was a Peds nurse.

But it made realize this: There are 2 types of people in the world. One's that truly care and one's who think they are entitled. Sorry y'all, you are NOT entitled to me speaking, I do because it is what I love to do.

Then I spent all day yesterday sick and on oxygen and medication. Lots and lots of meds. I was so tired and so sick.

I guess that bring us up to date haha
Love Y'all
~Poppet

CF Aware

Today is the first day of cystic fibrosis awareness month. Though most of my blog talks about this because my POTS usually under control. This past week has been a little symptomatic with my POTS but we will talk about that later.

This is the month where "we scream a little louder for a cure." But I guess this a good time to tell you how overwhelmingly sick I have been with CF this past month.

It has been almost a month of never ending sickness. I get off antibiotics for a few days and then I am right back on them for almost a week. I have been very dependant on my oxygen. Using it around the clock. I am on steroids every other day to a week or so at a time. Due to all the swelling in my airways with pollen season, I have not been able to efficiently clear my airways. Which means more mucus sits in my lungs, which puts me at a higher risk for an infection.

If I am out for more then six hours that infection is right back. 24 hours laters I have a fever. I am sure this is more so because I have the bacteria permanently colonized in my lungs. We have under control enough to cope with it. I am on around the clock benadryl because of this to. Between my MCAD and the my nasty airways its needed. Some days that I have to go out, Wonder Woman is coming for a parking place up close because me walking on oxygen even has been rough. I cough, wheeze, my heart sky rockets and I just feel as though I am going to collapse. It's awful.

I've been on oxygen to the point, I went to wipe my noes and it was nothing but blood. Something I have only told Wonder Woman. My airways are so dry from the oxygen that they are cracking and bleeding. My chest aches from the coughing and pressure and most night I go to sleep with a heating pad on my chest to make it bearable to breathe. This has been a more recent thing, or well more frequent i should say.

I sleep propped up and oxygen. Some morning I wake up and my lungs are still stiff, most I am ok. But I can't sleep with out it.

And my weight?? The only reason I don't have a feeding tube is because my doctors seen how much I can eat. My weight is low to the point I am considered under weight but my labs are decent and again I can eat a LOT. When I am sick I am more dependent on smoothies then food though.

Life gets rough when it comes to my health. I spend hours doing treatment. Though I can say I have a truly amazing life. Because people around me make it so.

Enough depressing stuff for now.
Love Y'all
~Poppet