Corned upset cat

So i spent at least a week now on steroids. Which means my emotions are just stupid at this point. Oh you love me?? Well let me cry as if you told I am the worse person alive lol. No really very few people can make me smile on steroids and though there is one guy that guarantee a smile out of me on steroids. We will talk about him another day. But on to what this post really is about.

Approaching strangers with disabilities. I am sure you are thinking you really need to address this?? YES. We are treated as if we are a creature from the darkest depths of the earth. Lets start with the proper way to approach people. 

I was in Verizon this week. This guys were just beyond fabulous. They treated me like a normal person. I had nothing but good things to say when I left there. I even made sure the person who sold us the phone would be there to set them up when they came in. They were so polite and asked me if it was OK to ask me questions. If they could ask me about my disease and apologized for asking. There was no need for them to apologize at all. They approached in such a sweet manner and I really enjoyed speaking to them. No really if you guys ever read I am so happy I got to see you that day you guys were fabulous. 

If you approach me with respect as they did "hey can i ask you question about your disease?? I am so sorry to intrude." This will guarantee open me up. I love educating people on my life. And really the sales person that works me deserves a promotion she is such a sweetie and so does the guy that was talking to me to. Anyways

Brings me to today. 

I go to the pharmacy i ALWAYS go to. They know my birthday by heart I am there so much. And I park where I normally park. This old lady watches me. She stops by the handicap ramp, watches my every move. I get my stuff out the truck, cover my face walk in and run smack dab into her cause stopped abruptly to question my oxygen and where I park. I am visibly short of breath. Taking deep breaths to get enough oxygen in my lungs. I am wheezing. As I had a bad reaction yesterday and a minor one today cause i  cut benadryl short. I had to walk a distance at the other pharmacy so I was pretty much spent by the time I got to my main one. She wanted answers of what was wrong and wear I parked. NO! This is NOT how you approach someone. You don't walk up to anyone and demand answers. It is none of your business what is going on in someones life. 

Sometimes in society I feel like my life is on demand and everyone needs to know what is going like it is there right. Here's the thing. If you approach in the manner that the people from Verizon did, I will stop and talk to you. I will educate on what my life is like and how crazy it can get. But if you come up to me demanding an explination on something that is none of anyone's business I will shut down. 

Now don't get me wrong at all, I will say it again. If you want to know a bit about why I am on oxygen. Please approach me in a respectful manner. "Can I..." "I saw this, can I ask you..." "Do you mind" Honestly no I do not mind please come talk to me I am not a mean person at all. I just ask that I am respected and not as its your right to know. 

i am ready to cry so its kitty loving time and coffee time. 

Love Y'all

~Poppet

i really hate spring

I have been sick lately. Not sure what is wrong. The pollen swelling my airways making my infections more frequent. Or not allowing me to clear my lungs. But either way around 2 I spike a fever. I was really sick this weekend. I am doing everything I can to prevent it. Meds, extra fluid, more meds. I am hoping I have it some what under control for today. Theres a lot of things going that need to be done. So I really gotta get this under control ASAP.

I am not sure what to do other then let it take its course at this point and stay on top of it. Which means living on benadryl, prednisone, and doxi. haha Such a combination. I am either flipping out over something or trying to control my anxiety. I never have anxiety unless I am on steroids. And last night poor Wonder Woman had to stop and go "it's the steroids talking." I flip out so easily on these meds and my face swells and its just over all miserable on top of being sick with the lungs. It's hard to sleep. It's hard to do anything other then cough. But I still have to function in life. Cook, shower, clean up. I just can't sleep all day. Well even if I wanted to I couldn't. I have gotten lot of reading done though.

I always feel like I am struggling lately. Wanting my oxygen, being early or on time for my meds. I am sure its just because it's spring. I don't do well with spring because of my allergies. But it's always in the back of my mind I am getting worse but try not to think much on it. I always have some one cheering me on that I can do this and successfully over come all this and get back to my base line.

What I really really really need to do. Is get my meds and my hair piece for graduation. I have been wanting this one hair piece for a long time now and haven't bought it yet. So i figured I should go ahead and get it. Which it's not to expensive at all. Then I have an appointment in may which I think is the same week as pinning so I really gotta get to feeling better asap.

I know its view but this also means I have to dye my hair!! Which doesn't take much but it does mean i need a small amount of energy. I guess that is where coffee comes in.

I also have a surprise in the works for Dr Dean I need to work on. Which will not take much to do at all. I would post what it is but I think she reads this so I am going to leave it as a surprise. i also got it in enough time that I do not have to rush to get it done. I can also sit right here and work on it to, which I think I just might do today. Art does calm me down and the steroids oh gosh they are making me panic at the littlest thing.

Well I guess  I need to get off here so I can disconnect my IV and eat.

Love Y'all
~Poppet

Disability

Recently I tried to watch Patch Adams on netflix, someone also gave me this movie. It is suppose to be a comedy based on a real life doctor. I am very blessed I have a team of medical professionals that now me all to well. I am the "crazy girl" this is truth and not insulting it has been my reputation for as long as I can remember. I have always been off beat and did what I wanted. Including wild hair and tattooes. Not the point though.

The part I was able to watch was one soul doctor wanted to get to know the patients, instead of dehumanizing us and listing us as our disease. Which happens more often then not. Especially if your chronically ill and don't end up in the hospital where your doctor works.

People who are chronically ill seem to be dehumanized to the point society expects to look a certain way, and i have been at the end of this many times. They expect us to look frail, sick and in wheel chairs. They expect us to not to look put together. Well this is what I get from them.

I admit I park in handicap after much fighting with Wonder Woman. "Use it." Fine. lol When I go out I spend a good 2 hours on my appearance. Vane?? Who cares, I have all right to be. I get to go out once a week and sometimes not that. When I go out I have nail polish on to hide my dusky nails, my lip slathered in something so no one can see my purple tinted lips from lack of oxygen. Blush and Bronzer to make me look alive, decent clothes to hide the fact that I am sick. Yes!! To hide the fact I am sick. Sadly this always back lashes on me, and I always have my oxygen on. I have been gawked at and even had the police called on me. Because I do not fit the description of chronically ill.

My diseases are considered invisible. My lungs fail a little more each day, my heart is damaged and is always racing. I am usually short of breath and my lungs are ridiculously tight. Sometimes the only time I wash my hair that week is right before I go out or the day before. As when I wash my hair all the junk in my lungs clogs my airs ways and standing for that long puts me at risk for passing out in the tub which I had done before.

I guess what I am trying to get at. Not all of us who are disabled have some kind of visible ailment. We are not crippled (i do not mean this offensively) we have other issues going on. The ones close to me see me struggle. I get dirty looks from people as if "I don't need the oxygen." With out I collapse from lack of oxygen in my lungs. Or my heart rate gets to fast.

Never judge a book by the cover, some of struggle to have a "normal" life.

Love Y'all
~Poppet

Wonder Woman

Mothers Day is coming!! I am sure y'all know by now Wonder Woman is my Mom! If not well now you do. She has truly earned her name!!

I just got an email about something she wanted. She was very specific about this to, she came down the hall, showed me the shirt, told me she wanted it, shared it for me, and again told me she wanted it. So I did what any good child would do and ordered the shirt for her. Looking for something more to get her but I haven't gotten that far in life yet. Well more so I have bills to pay. But we won't talk about the boring things in life.

Wonder Woman has truly earned her name of the years. There has never been a time where she hasn't supported me in my crazy antics. Being a Chef, volunteering, colleges, as long as it doesn't harm me or someone else then she has supported me in it. In the past couple years she has taking on a whole new role in this crazy life of mine. My nurse and advocate. I see them as one in the same, a great nurse will advocate for her patient. She has been my home health nurse for almost 3 years now. THREE years of dressing changes, hospitals visits, making sure I am on my oxygen, and even spiking an IV when I get rediciously sick. She has dropped everything to be by my side and has maintained her job as a chair as well stayed honor roll in her degree. She truly is someone to admire.

I remember one year I was in the hospital the week before nursing pinning. Graduation weekend!! The chair has a lot of responsibilities that week to her students. She also was there for me. She had her students in order, had me in order and we made to graduation on time. Every hair in place. She has never once complained.

Recently I accidentally told my insurance company a nurse could call me since I qualified, I more so wanted an exercise/gym thing for my health. I need to keep my lungs in working order the best I can. She made it very clear "no outsiders" now I know this sounds mean. But with all my diseases we ask nurses we know for help if we need it. We know who I can trust with my health and pieced together dressing.

She also manages to get me out of the house, take me on trips and just have what we consider a normal life. She never lets me be alone, she never lets me feel like their is no hope in all of this. She supports all my art, my food, and make up addiction to cope. By food I mean cooking and sending it with her to work. She has never once giving me a reason to call it quits but she has constantly supported me in always to extend my quality of life.

But I need to get off here I have food going lol
Love Y'all
~Poppet

Spring!!

Somedays I feel like nothing goes on but everything goes on at the same time. Lately I have been crazy busy and I swear alls I am doing is running around which I am ok with. It is physically draining and on top of that it is pollen season. Which is no good for me at all. I come home take my cocktail of lung meds so I can breathe. Superman told me a long time ago that Spring I would need steroids every time I go out. He was NOT wrong. I always forget to cover my face until it is to late. WHOOPS. lol and we are so use to cold weather you cover your face but we are not completely use to spring cover your face. Why?? I am not sure at all. But spring has been really rough on me this year.

But I am trying to not let it stop me, which is a bit hard at times especially when I come home and have to drug myself on prednisone and benadryl and i knock myself out. Then thanks MCAD I wake up the next day in a prickly rash. Of course allergies means more mucus production which means my lungs are overly junkie. Which is never good but it's something I can work with. But some how I manage.

Other wise there really isn't anything going on. I am trying to find a cardigan long enough to cover a PICC dressing so I don't have to wear a PICC cover. It's hard to wear dress clothes and make them look nice when you have a PICC cover on. I can make a nicer one but it will almost not be worn. But thats OK this a mission I can enlist Wonder Woman for. Some one told me to let her go to Wal Mart for me and pick a sweater for me and i am like oh no!! NO NO NO. Then I was like she bought me the dress as surprise and its PERFECT and she helps pic out my tattoos so why not trust her with an accessory. I said go for it lol. Find me one and I will wear it.

But I guess I should get off here for now I am suppose to get things done today.
Love Y'all
~Poppet

small update

I am sure if you have been following what has been going on with my will. Well it is signed and paid for thanks to a wonderful Lawyer and her staff. They made this experience very easy and non emotional. By emotional I mean, I had to make a decision to get a will so that I can protect Wonder Woman from unnamed people. She says its to protect me from "him." But at the end of the day she will be the one that could possibly deal with him. It is in hand and all people involved know all the details of it.

This whole process can get depressing. I mean my health is going down hill and I had to think about who I want to have what, where do I want money to go to, who do I trust enough to make sure my last wishes are going to be followed. How do explain to the people you love dearly that this is what I want just in case but our goal is to keep me alive. Help me fight another day. But please don't let "xyz" happen. It is the most depressing thing but most relieving thing I have done. There is one more thing I have to do but it's not something I can post on here but know it is being done.

All this made me realize one thing.

My warriors are the strongest and most supportive group I could ever have. They assure me when I need it, they let my cry when I need it, and most of all they are just there. They take time to make sure I am OK, they make sure that someone is always there for me. They have no conditions behind this just the fact that they love me with all their heart. They deserve the entire world and more. I am going to do everything in my power to make them proud to stand by my side. I am going to leave them an awesome legacy to keep going just because they deserve it and I know we together can change the world. We as a group can make this a better place.

But I must get off here I need to dye my hair the All Father is expecting pics today.
Love Y'all
~Poppet

Smokers

Smoking!! My up most pet peeve. Smoking.

Shocking right?? Someone with lung disease anti-smoking?? Who would have ever thought. But seriously...

If you want to smoke in your own home or away from doorways I do not care. But know you SMELL like cigarettes. I can not tell you how many people walk by me and I have a horrid attack because of the smell. Which can be bad!! But not as bad as direct inhalation of smoke.

I have only had ONE seriously bad reaction to someone walking by, I have no idea what happened but my air ways shut down, my throat got tight, and I could NOT catch my breath on oxygen. I was grabbing for all my meds all at once in the middle of the grocery store. Drinking some benadryl, taking a few pills, and using my inhalers. Wonder Woman close making sure I have everything and I am breathing. Now, I usually do not react this way, just a mild cough and airway constriction. But that time is was HORRID.

Well lets talk about what happens when I breath in that stuff when someone is careless where they smoke. Yes I am clearly upset about this. Yesterday, I walked past one person smoking and into another. As soon as Wonder Woman does what she does best. Smokers, benadryl, inhalers now. Lets me get out of the road. (i ran into one avoiding the other) So I take it, I feel no releif so once I got to sit down I take some more. I keep assuring her I was OK. I mean I am oxygen and taking everything, but when I walked out MORE smoke. I get in the truck as fast as I can, stupid skirts I half to wear because I finally got my Christmas tattoo. So here we go. Take some more meds, take some more albuterol, and I think I am fine. WRONG!! Oh I was so wrong. By the time I got home, you could hear me across the room breathing I was struggling to get air into my arms, let alone out. (It's hard to get stuff out when mucus is blocking my airways.) I got a breathing treatment in, I got mucolytics in, I got on my machine, and MORE benadryl and steroids. Though I am doing better, I am still on oxygen. I am struggling but not as severe.

Two people decided to smoke in public and because of them I am sick. Yes this was directly related. It sounds harsh but this is reality for not just me, but people with lung disease and other diseases. This is what people have to think about when they go out. We can not be care free. We have to be extra cautious about it. I have to watch every single surrounding as does Wonder Woman. It gets to the point its almost impossible to get out. This happens everywhere!!

Now if you read this far, and your offended, this is my reality. I am not asking you to not smoke, I am asking you to do it away from  door way and do NOT exhale into the stores (that has happened to me to).

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