Wonderland

With the new Wonderland movie coming out my social media has been loaded with Alice and her crew and in turn everyone who knows me has endlessly heard about Wonderland. Which really is no different from any other day of the week and my dedication to Wonderland goes as far as tattoos on my lower right arm with my twist to it. I have always told some people close to me that Wonderland is relatable which usually gets me some twisted looks. "Your crazy?!?!" Well yes in a sense lol but not to the sense they infer it to be. Its no secret that people say Wonderland is based on drugs and psych disease as I just upset every Wonderland fan thats against this statement. Then I happened upon a meme relating Alice to POTS which is one the of  the diseases I battle. Is the effort of getting up to make a daisy change worth it?? Referring the effort of getting up while having POTS is an effort but so is the effort to get up with crap lungs that CF has left me. To further go on to say that like Alice my reality is different from yours. This is the BIGGEST controversial statement I say for most people. Most people tell me how dare I say that I should see myself the same as everyone else and try to convince that I need to see myself the same or as Wonder Woman tells me a lot of people see me as an inspiration which I quickly shut down. Though I will quickly tell you I am Alice and this is my Wonderland what I don't tell you is I can easily relate to all the characters...

Lets start with the Mad Hatter who sits with the March Hare who is in a perpetual tea party because his pocket watch broke. (read the book). So many people have sacrificed their life to help me with mine. They've giving up everything for me to give me a quality of life. What really hit home to while I was trying to convince Wonder Woman to do gel nails she promptly told me "Why would I do something you can't be around." Here I am trying to convince her to do something as silly as painting her nails and she says that. She sacrifices something so many take for granted to keep me healthy. Like the Mad Hatter she takes the patience to sit with me while I go thru the insanity of my life. 

Cheshire!! The cat that everyone loves to send me (not complaining) cause I am the crazy cat lady. He is always the voice of reason with in Wonderland. He has this twisted logic of blatant reality. "You are among the mad." "Why does it matter which way you go when you don't know where you going." Trivial but real. I also have to say you have to half mad to smile and live with a disease you know will kill you one day. I am always up front with my reality as is my health care team. He may disappear from the picture but he is always there. He never leaves but at times he leaves his smile as a way to say I am here but not gone. 

Caterpillar or Abselom as he is called in the Tim Burton movie. He always ask rather blunt difficult question. We often face difficult questions. Transplant?? Lung function?? Is there anymore options?? Not to mention tough questions we have to face with our loved ones... Are your prepared for all this?? Can you handle how crap my life can get?? We have to have difficult conversations all the time especially when I was writing my will are you OK wit this life decision?? I am not gonna elaborate much but we've had quite blunt real convo's about life. 

The red queen is always angry and want's complete control of every situation. To wear her King is a bit more lax about things. (read the book) I am not angry though I have every right to be though I always have tight control of the situation because I need to. At the end of the day my health pays the consequences no one else. If someone defy's her "off with her head" people almost live in fear of her. Though I have learned to not live in fear of my disease. There are times that it does get quite real. Yes my disease is the red queen and me the person I want to be is the king at times. You want to do this?? HAHA think again!! Stairs?? HA!! Concerts?? Forget about it!! Last minute plans?? Not Happening!!

And the most important to this entire list of characters the White Rabbit who is contasntly looking at his watch going "Im late!! Im late!!"He's so focused on the time and where he needs to be. Which I am typically always late... But here is the thing. Time is precious!! It is so precious. No one says tomorrow is guaranteed. No one says my healthy is not gonna take a turn for the worst no matter how hard we work. Be with people you love. Make time for them and run around looking at your watch as if your late to be where you want to be and with who you want to be. Growing up with a nurse you realize at a young age its not the length of life you live but the quality of it and doing what you love to do. Every moment is precious and a choice to make a change!!

As always 

Love

~Poppet 

...

I recently had someone message me and they saw the oxygen and asked if I had Pulmonary Hypertension and I explained that I didn't but knew a bit about it. They replied back they were hoping I had it to so someone could understand what they were going thru. I am not gonna put anymore out there then this because I really didn't ask to put them in my blog but this needed a bit of an explanation...

My biggest complaint health wise is no one truly "gets" what I go thru. Wonder Woman does to an extent but it's very medical based. It's very hard to find someone who "gets it" from a patients point of view and what they truly go thru. A lot of people think I over exaggerated what I go thru. Or that I will one day get better. There's a list go things people expect out of me that I really can not guarantee or they think I can do more then what I say I can do. I got a text from a friend recently that said "i don't understand how a shower is so stressful you cook." Its like first of all I have food allergies i HAVE to cook every meal. Whether its thrown into the oven or i take the time to cook something I don't cook I don't eat. That simple. Showers or bath take everything out of me. I am short of breath, I am dizzy, my heart races, and my chest gets tight. I have to stop and catch my breath. Getting ready is exhausting. I give myself 3 hours to get ready so I can take the time to not exhaust myself. Cooking is just as exhausting but I can sit down at time needless to say I am exhausted all the time. I am also in a lot of pain on any giving day and now I am dealing with stomach side effects of a new meds which the meds make me sleepy or i just don't even eat much.

In all honesty I down play what I go thru in real life. I often don't even mention how poor I feel because whats the point?? I cope with it very well and if I can't i say something and  get the help i need.

Back to the point. It was so nice to talk to someone who gets it. I don't have to explain things to and I can relate to. It's so rare I get to talk to someone who totally understand what I am going thru and can relate to me on a level most people can not. They understand what my reality is and empathizes with me and the reasons why you want to push somethings off. What the future looks like. I almost never get to talk to someone about this. Lady Sif gets what I go thru being chronically ill and all the meds and drama that goes with it. But I had lost the one person that got what it was like to live with lung disease. And when I got that news I broke down. I lost not only someone who I was close with but to lose someone who fights with you is just devastating. She was a huge part of my life since high school so that whole situation just broke my heart.

Most days I truly get "serisouly your chronically how much do you really do??" The truth is... A lot more than you do. You go to work, class and eat which probably you don't have to cook at times. Or if your to tired to cook you can eat something from the local burger joint. Me?? I am a personal Chef, and also do makeup on the side for those who ask. I cook 4-6 meals a day, I do hours worth of breathing treatments and chest PT, I go to appointments, take hands full of drugs a couple times a day, and still have to lead a normal life. Don't be so fast to judge. Most of us our not lazy we do much more then you ever thought of. And if you have a disease its OK to reach out to someone like you just to understand you. And for those who love someone who is sick all the time. Be patient they are fighting a battle bigger then you could ever imagine.

Love Y'all
~Poppet

Fluffy!!

The past week has been rough. Not only was I sick and have been making never ended phone calls and had a bit of a set back. I did a PF to monitor my lung function at home and it was really low and I didn't think much of it as it happens. Well I was sick. I was on steroids, Benadryl, antibiotics, my oxygen was turned up and was doing meds regularly with PT. It was to the point I was like Wonder Woman after Saturday if I need to go in you can take but I want my Saturday night. Here's why.

I went to see the comedian Fluffy (seriously google him I have never laughed so hard). A couple weeks ago I was getting a tattoo and he was on the TV and my artist left it on and was having a bit of a giggle cause I had to stay still cause well ink is permanent. And next thing I here is "Poppet he's coming to our area, tomorrow you buy tickets." OK, thats fine... Can I borrow your credit card :-D!! lol. So I called got details and what was safe for lungs and got tickets. Well about a week or so before the show I got an email about upgrading tickets and meeting him. OMG. So I go to down the hall cause it was late and got Wonder Woman!! Look at this!! She immediately gave me the OK to call get details and order them. I told her I would tomorrow once I get settled at the All Fathers since I was house sitting.  Got everything set. Couldn't remember whose name I used to buy things but we were both there the day of.

So Saturday I got up and I'm excited. I do all things I need to do and start to do my makeup. Usually its whatever I make it look neat and proper and go with the flow but now I am meeting this guy that has been making me laugh and cheer up thru all the up and downs my life has giving me. Yes I mean I have my friends that do that to but sometimes its not to turn off the phone and just laugh. Then being a girl I had no idea what to wear but wanted to look decent and not sick!! I wore legging and a sweater i LOVE and didn't even think of the fact I'd have to stand out side in the freezing cold for an extended period of time but sucked it up and entertained myself and  Wonder Woman to meet him!! OMG. OH. MY. GOSH. I got to sit down for a few minutes catch my breath and such and then I got to meet him. I also got to see Wonder Woman smile and be happy!! I put my stuff down and he comes up to me and ask if he could give me a hug. OF COURSE!! I got a huge hug from him. Even Wonder Woman was like he gave you a big hug!! He was so nice and he told me to be careful I am sure it was because of my oxygen. I promised him I would and I had meds. It was such a wonderful night. I learned I still could walk up a flight of stares. Well I can but it hurts. I also got to exercise my lungs by laughing and enjoying myself and seeing Wonder Woman happy. That night made a week worth of stress and tears worth it. I fought so hard to be OK for that night just so I could enjoy myself with worrying to much about my health. I can't say I worried much at all once I was inside.

I am sure he will never realize this but he had a huge impact on not only me but Wonder Woman. He's the first comedian we put on when we need a laugh and I am so blessed I had the opportunity to meet him.

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

positive

I'm exhausted and sick and waiting for a company to call me back so I can call my pharmacy by a certain but it does not seem to be happening. I am on steroids so I am trying to keep my emotions in check. Its no ones fault at all but its OK things will work out. I promised my wonderful nurse Pumpkin Muffins (no i have not been in) so i decided to bake. The act of making food is what makes me happy. Not eating it but making it. Yes I love food to but theres nothing better then cooking. I am tired, short of breath, oxygen turned up, and little sleep, but its a passion and an honor to cook for nurses. While I was baking I got a phone call back from someone and I made the comment its beautiful and the sun is shining it makes for a lovely day. Then you hear in the background "its cold!!" Ok I have a fever I am not cold at all, in fact the 66 degree temp is just cool enough I am not flushed and gasping for air. But made me think of a convo I had yesterday...

Someone who will remain nameless messaged and we were chatting and they said "id rather have an easy life then not taking things for granted. I read the texts put my phone down said something to Wonder Woman. She came into the sunroom to tell me something and I figured as always i was over reacting its what I do. She sided with me. I don't portray that my life is complicated and stressful in my regular life. Why I have this thing. I tell people I am OK or Good thats it. They also told me you can't simply choose happiness. Which I of course replied why can't you?? Does require being mentally strong?? Yep!! Does require the beauty in life being first?? Yep!! It's our choice to find the good in life. Yes it's harder for some then others but it starts with positive thinking. Or as Alice would say "I believe in as many as 6 impossible things before breakfast." Huge alice fan by the way. I could sit here and tell you every little thing that is wrong with me. Which I am sure I just did in a way in the first paragraph. Or I could tell you. My pharmacist is incredibly sweet for looking out for me. The people I have been talking to have be nice so far. Muffins are baked for people who appericaite food more then anyone. That is where it starts. Life is about how you choose to react to it. My life up until now has not been easy. I had to fight for a lot in my life and my past is not rainbows and sunshine. But i have learned if we find one good thing in every day we can easily find ways to brighten are day. Is it "cold" well yes probably but the sun is out, my cat is happy, I don't have to cope with poor weather, and i have not yet been bit Kittie Cute.

Life is one of the hardest things to cope with it. I get it!! I am chronically ill and every day is a battle in its self. But every day I sit down in my sunroom rain or shine. I watch this little grey ball of fur cry her way into the sunroom because her majesty just can't be bothered to open the door. She'll either sit right next to me during treatment or lay in the sun. After all is said and done she'll stretch out meow at me and get petted with a look up contentment on her face. She snuggles under my neck when I don't feel good and the nights I can't sleep I get to see Wonder Woman before work in the morning. It really is not taking things for granted.

I have not been hanging with my friends lately. They don't seem to understand until i spell it out for them which  I have no issue doing. But I also explain to them you don't see this side of me because I choose to let the brightness shine. God made me this way, I have wonderful friends to love me for me. He's put who I need in my life and I am more then grateful for everyone of them and there are days where I will stop and just say "Thank you God." Find the good in every day. Search for it. Find it. Embrace it.

Love Y'all
~Poppet