The People We Meet and Will Never Forget

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I have something to say. Something to stamp here on this blog so it will be remembered and kept sacred as long as this site remains active. A place for my stories and footprints I have made and kept treasured. I wanted to write this small story because it meant something huge to me. I didn’t want this to be another facebook post that would be scrolled by and forgotten in 24 hours. So this story is here now. Where it belongs.

Back in February I was hospitalized for 10 days. During my stay I had a roommate name Arlene. We were both sick and did NOT want to be there. But we spoke and made jokes and gave one another comfort during the hard days and nights. I never saw her face until the day she finally left to go home. I remember her coming out in her wheelchair and smiling at me. We instantly reached for each others hand and held on tight as we exchanged smiles and tears. We had only met a few days prior and our last words to one another was “I love you.” Over the next few months we exchanged cards in the mail and I was so happy to hear from my hospital roomie with lovely cards and HAND WRITTEN LETTERS! Something you don’t see everyday anymore. It made me smile and gave me something to look forward to. I hung all her cards on my wall, such beauty and love.

But this morning on my way to the hospital I got a letter from her daughter telling me that Arlene had passed away. I couldn’t stop crying. I still can’t. Crying as I write this message in her honor. I had only known her for a few days. But that was all it took. A few simple kind gestures and exchanges and she touched my heart forever. Its funny who we meet in our journeys. The ones who come and go so quick yet they are the ones that leave the most impact.

I’ll always remember her. Always treasure her notes and her words. All my love to my hospital roommate, penpal and dear dear friend Arlene. 

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The Sims

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I never thought I would be writing this….but here it is. The game known as THE SIMS has really saved me throughout this past year and half. Since my illness I have lived vicariously through these made up stories and creations and have really been able to live inside a world that I haver created all my own. Now okay YES I KNOW its a video game and it’s not real. But because of my lungs not working and being in pain and in constant fear of attacks or even dying in my sleep from suffocation let me dream and enjoy my fantasy a little bit here.

When you’re ill you always need to stay productive and you need to stay positive. Well this game honestly helps me do both. In this little Sim world there’s no judgment, hate, crime, fear, maybe the occasional trip to outpace from alien abduction which I haven’t figured out how to disable yet haha! I can do EVERYTHING I want, that I’m unable to do now. It’s really my own private paradise. This month was a very big treat because they added island living. You can create a mermaid and the water and world looks like tropical paradise. I can swim for hours since I can’t swim right now from being sick. I have created a family and take care of all six of children. Shows how much i really want to start having babies of my own once I am well and healthy enough to date and meet someone. I have been promoted at jobs and okay yes I use the cheats to give myself TONS of extras including becoming a millionaire because I mean who doesn’t want the ability to BUY everything you want?!

I have really made something special with this place. I have fallen in love with my little people and my family and I am so grateful to have a place to go when everything is at its worst right now. Soon we might be able to find out what’s causing this and I am praying we do so I can start living again. Until then however I will live on with my sim and take on the day. Oh! did I mention they have seasons too! I can skate on ice and jump in piles of leaves and ever shower under a waterfall! WOOHOO!~ (that’s sex in sims world too lol!)

Thank you for listening to my rant. I think tis really impriotant to have things to keep us busy in order to manage and get through the toughest times in our lives. I am just so happy to have this. Along with my REAL family and friends of course.

Always.

Dag dag! (bye bye in sims)

My Own World

So I had to write something and get it out of myself….

The loneliness creates demons. Demons that have no empathy and only pain. The darkness blankets over me and cradles me like their own. I realIze I am on my own during this ordeal. I realize that my life has been taken over by the broken glass that stabs my every breath. There are moments I can’t fathom this, I can’t survive and feel like a normal human being. I can’t stand while everyone ventures off into their own lives and I am here alone, sheltered creating my own world that I can live with for the time.

Sometimes it’s too much to take. If anything though this journey has given me strength and made me realize how important the little things in life are. Like drinking from an actual glass or being able to laugh and smile without feeling pain. Take nothing for granted in your lives. Be thankful for what you have and for the good health that fuels your body and mind. I know there are others much worse than me and in my own world I have created they are all healthy too. We play and we sing, we dance and we cry in love and happiness.

The demons that have came to me and the ruthless dreams that plague me, you no longer have the best of me. I am keeping myself strong and moving along this path, wishing and praying that the doctors find out what’s wrong with me. Meanwhile I will live in this world that I ave created where I am no longer ill and I have my friends and loved ones all around me.

The meaning….thank god for imaginations.

Mama Nancy

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I’ll start this by saying it’s very true. Friends do INDEED come in many different shapes and sizes. This dear friend I made was so small in height, but so very big in heart. I met her at the Walker Stalker Con in Boston way back years ago. I had added her on the SHINE group and she was always so delightful and so kind. Spreading her love for Sean Flanery and for all the lovely ladies in group who needed a shoulder to cry on. Mama Nancy offered both of hers along with an everlasting embrace. She held me so tightly when I first met her and I wanted nothing more than to hold her the same. Every Con I have been to since we could always rely on Mama Nancy being there for she was…IS the heart of the SHINE group and has a piece of my heart with her always.

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I had never met a more grounded and sincere lady in my life. She supported me and took care of me even though I wasn’t her blood and wasn’t even in the same house or state. With her lovely caring messages and profound love and gratitude she helped me through this illness. Nancy helped my family, helped me with my medicine and helped give me hope and always the remembrance of love.

It’s very rare how a little group like the shine group can bring so many people together and how amazing those people can be. I may sound selfish for saying this but honestly I am so very very happy I made the group. It was because of Sean Flanery that I wanted to make a place for people to come together and help one another in life. I met an incredible woman that way. I have since met hundreds of incredible men and women. Mama Nancy was a shining star and she always had her own input. She could be sassy and firm and also had a wild side, oh how she could make me laugh at some of her remarks and always smile when she looked adorable which was very often because she was so tiny.

I miss my friend. I miss the messages and the “knowing” that she’s okay and here with us all. I know we all have lost someone close to us in our lifetime and it’s never ever easy to overcome it. I don’t really think you ever do honestly. People always say…with time it gets easier. I don’t really like that word easy. NOTHING IN LIFE IS EASY. I use manageable. Deep breaths and fond memories. Smiles and tears. Hugs and kind words. Nancy gave me such a wonderful gift and I will always cherish it. I’ll alway cherish her.

I love you like the ocean. That’s what she always told me. Mama Nancy….I love you like the stars and now my love you are one. Burning always and watching over us all.

 

The demon called Addiction

Everyone is addicted to something. It’s so hard to control, so hard to maintain and so hard to quit whatever it is you’re addicted to. I’m a food hoarder, food addict and compulsive eater. I love food, it’s my comfort, my best friend, the thing that makes me feel complete and it fills the void of loneliness at times when I need it the most. I have used it to cope, used it to celebrate, used it to cure heartbreak, boredom you name it and I ave used it. Overused it countless times. I’ve been to OA groups, read the manual and the “bible” based handbook for the divine intervention of over eating. I know the words, I know the sayings and I know what the actions should be, but it’s ALWAYS easier said than done.

To people who don’t have this addiction or ANY addiction, I can’t even begin to explain it in ways you’ll ever understand. It consumes you, it takes you over, it’s turned me into a blob from a nightmare. It’s affected me emotionally, physically and ruined my life. I’ve missed out on so many things, so many years wasted behind the tv with a large plate of food, instead of living to my up most capacity and capability. When I acknowledge this I break down, I cry, I hurt myself by not eating, by looking at my reflection and saying how despicable I am and how disgusting. Those aren’t the words you say I know. The only way out is through, I know that too. These past 9 months I have been battling some sort of lung sickness as you are well aware. The steroids have made me gain over 100 pounds. I am no longer myself. I ate a lot during this time as well I will admit. Mostly to comfort my wounds of being sick and to make me feel better. Nothing got any better, only worse. I was then hospitalized and they put me on a strict diet, counting calories and lowering sodium and fluid intake.

I’m home now and I’m sticking to it with the help from my mother whose doing it all for me and I am a very lucky person to have her help. The demon inside named addiction is killing me. It’s so hard to see others enjoying good hearty food and having fun by celebrating with food and I am not allowed. Instead of comfort I need to view food as energy, instead of a friend I need to think of it as an object that I need to survive and only that. I want to cry so bad. It hurts knowing I’m not allowed and feels so unfair. But that’s the addict in me and it’s better for me and soon I will realize it. I already am when I see that number on the scale decreasing. So far about 40 pounds.

I have so much to do. I’m already 31 and I need to get well. I need to find a job and start working again, I need my own place, I need a man, I need a family of my own. There in a nutshell is what my main objectives are. Getting well means facing this addiction, putting it down and fixing myself and losing weight. Just forgive me for the tears and the anger that accompany it.

I have said enough for tonight. I had my healthy food as everyone had take out. I slept and woke up and ate and got through the night. My stomach isn’t growling and that is always a good thing too. Thank you for listening and being there. This demon won’t ever go away but I, hoping one day it’ll be behind bars and I will be laughing at its face with the keys of fortune in my hands.

A Warm Heart

Today I saw nothing but smiling faces and open hearts. It’s Christmas, the most holiest and most wonderful time of the year. I’m not an overly religious person but I do believe in God and in Jesus and fate and a good spirit. I try my best to love and live in good spirits and no matter what difficulties I’m enduring I try to overcome and always put my best foot forward.

You all know how sick I have been. I pushed myself to go to my family’s get together and there we all drank, ate, laughed and enjoyed one another’s company. For a moment I forgot how sick I was, everyone for a moment forgot their troubles and we all focused on the love we shared and the happiness we created by being together. It really means the world to have someone to share something with. Even if you’re alone and you make a phone call to a friend and ya how much you love them, the feeling is there and it means so much. Today meant everything and I was so glad to have had it happen.

Christmas is the birth of Christ yes, but it’s also about the abundance of love and harmony one has. Jesus is love isn’t he? Like I said I’m not religious and this is most likely the heaviest I’ve ever talked about it in my lifetime but when you’ve witnessed death, and have been sick and have lived in pain and suffering you tend to reach out to a higher power and belief. I believe mostly in myself and what I can achieve. I believe in my family and my parents. I believe in my strong hardworking friends who are amazing in every way.

We all have a warm heart and open eyes. This world needs more of them and more than anything it needs love. God Bless you all and thank you for reading my rambling yet again. Still trying to get well but today helped greatly and made me smile.

It meant everything.

Saying Goodbye

“You know when you think you know someone? More than anyone in the world? You know you know them, because you’ve seen them, like, for real. And then you reach out, and suddenly they are just… gone. You though you belonged together. You thought they were yours, but they’re not. You want to protect them, but you can’t.”
Ava Dellaira, Love Letters to the Dead

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Everyone knows by now that my grandmother has passed away. She died earlier this month from cancer and it was a grand battle of 10 years and she fought strongly and bravely the entire time. I think some of my strength in life comes from part of her. Things weren’t always the best with her and sometimes it was hell on earth, but still she was my grandmother and I know regardless of what happened between us she did love me very much and I loved her. Now that she is gone I look through all her belongings, part of me feels like I will get scolded for going through such personal things but its given me a chance to know her better as a person and what she was like at my age. She was never an emotional person or showed much empathy or even a “girly” side, so seeing her jewels and her pictures of being a girl are really quite amazing. Part of me wishes I could have known her back then, seen her smile and laugh and ask if she was truly happy with the life she had started.

Even though she is gone now I still want to appreciate her. Everything her and my papa did for me during the years I lived with them. The things they both taught me in their ways and the stories I heard and will always remember. Sometimes its the little things that matter and mean the very most. Just seeing Nana in her chair playing her games on her iPad and seeing her smile at me. Seeing Papa drop ice from the fridge and say “Fuck it.” as he walked past. Little things that made me smile and meant so little at the time, but really mean alot now. I haven’t been able to cry much these days since I am so ill. Not being able to breathe limits me from my emotions and so I guess writing this is a way for me to surpass that, but still I sit here crying. I miss them. They were my grandparents and they were a big part of my life. The house they had is now sold and gone and I will never be able to go there again. Its quite sad the things you lose in life with just a blink of an eye. It makes you really appreciate what you have left in the end though and what you had during that time.

I say goodbye to them, but also I will see you again sometime along my journey when its come to its end. I know they both will be there waiting for me with smiles. I just hope to do them proud with the time I am still here.

I am still here and I plan to do my best with the time I have…now to getting better….

 

Sometimes

Sometimes the pain returns…filling us to our rim of unforgiving endlessness.

Sometimes you want to cry….erupt into a thousands pieces, never wanting to become whole again.

Sometimes, that’s what you feel you deserve, sometimes its what you get….but then sometimes…in the midst of our despair and pondering into darkness, you see something that reaches out to you.

Something that will never let you go and once you find that…you must never, ever let it.

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I feel like I have lost everything. I feel like everything I once was is now gone. I have no hope and no reasons. Yet I still have some kind of strength inside that keeps me going among all this pain and suffering and sickness. I have lost jobs, friends, love, sometimes it gets so bad I feel like I can’t even reason with it. I hate this world and all the pain that resides within it. I hate seeing all the happiness all around and yet I can’t have any of my own…not yet anyways.

I don’t want to sound like I have given up. In am just defeated. Like I said earlier pain changes a person and I am now changed. I can’t even fucking shave my armpits because I can’t raise my arms anyone due to the pains in the chest muscles because of this cough. I have had people tell me they don’t support me and hate me and think I am “VILE” because I asked for financial help on my social media. they treat me like I have been a beggar for years. When actually I have never ever done anything like that before and it was a last resort. It was for medicine, breathing nebs for my machine. Cough medicine and steroids to help keep my airways open. Its just so unfair. Keep going to the hospital and they say the same thing. I am a “puzzle” a tricky question they don’t know how to answer. I have been stabbed and scanned and pushed and squeezed and tested and I don’t know what else they can do. Perhaps I am paying for my sins now? Paying for anything I have done?

I am not special or important. I am not dying because of this, but I COULD. There are so many others much worse off than me and I am so grateful for the people who are supporting me and helping me in anyway they can. This is not a oh pity me entry. I just need to vent. I need to get this pain out of me and the hate and anger and sadness. Everyone is different and we all have our own points in life where we lose it. I am at one right now. I feel so alone. I want someone here with me. That’s enough bitching for now. i need to try and shower.

Thanks for reading.

I’m still here….

BREATHE!!!! easier said than done.

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Hello again. It’s me. I am writing because I need something to occupy my mind and my jittery fingers while my chest throbs in impeccable pain. Yes, I have been ill because of my asthma for almost 3 months now. Yes. I just came off of an asthma attack and am now going through the effects of the medication I needed to have in order to breathe. Hence why I am writing, trying to work through it. If anyone has ever suffered or does suffer from asthma you know this feeling all too well. The way your lungs cease up instantly, they feel like they will explode from your chest, you heart races and you feel like you’ve been thrown into an oven because you’re so overheated and coated in sweat. It’s almost like you’re drowning, except on air, that won’t go into your lungs. Its really quite incredible that this actually is allowed to happen.

I took so many things for granted when I was younger and yes I had my rebellious years of being a grade A asshole and I did smoke for time. I was thinner, didn’t really care about the consequences, was angry at myself and I think in a way other than food I wanted to punish and hurt myself, so there we have it. Cigs! and Smoke! and Uh OH! fucked up lungs. I haven’t smoked in years now…but I am just saying that yes I did in the past. I have done a LOT of bad stuff that I regret, but theres no use in talking about it, nothing can be done about the past, only the future is what’s important now, MY FUTURE. I have lost 3 months of my life, lost jobs, lost time, lost hope. I have fallen so far down, I don’t even know where the starting point is anymore. My first and foremost goal at the  present time is TO GET BETTER. IN TIME. The doctors say. Rest, try to move, take the medicine. I want to fucking KILL everyone of them. YOU TRY TAKING THIS SHIT! YOU TRY LAYING DOWN ISOLATED WHILE EVERYONE ENJOYS THE AIR AND THE OUTDOORS! Like really?! Easier said than done pal. But yes I am following the orders, next month I see a NEW asshole who will mostly tell me the exact same thing. But I am not pointing any fingers at them. The finger is pointed in my own direction. I was asked months ago by my Lung doctor to get my blood tests done and I didn’t do it. I felt fine then and didn’t think it would prove or show anything, but come to find out it would show a lot and could actually show what is wrong with me now. Everyone is like GO GET IT DONE! I CANT…because since my lungs are inflamed…I still need the steroids and I can’t get accurate testing done until I am off of them for a time. The doctors plan is for October, he thinks the cooler air will help me heal as well. I agree. That’s my plan, thats my life at the moment, my goal.

The pain is just terrible. An airway of shattered glass and a heavy pressure as if someone is sitting on you back and chest at the same time. But worst of all, its the fear, the fear that what if they don’t open up and I die? This would be it? I try my best to not think of that, but haha it sadly comes with this disease. Only relief I get is when I have my nebulizer treatment and I have no graduated to 5X a day. I have over a dozen medications that help with the side effects of the steroids and the actual asthma itself. I can honestly say that this has been the worst time of my life. Seeing my parents eyes widen with fear as they hurry to unlock the front door to the house as I manage to walk to my room and get my machine on in the midst of an asthma attack. I hate having them worry. I hate the fact that they need to give up their loving pets because of me, I hate having to ask for help to buy medicine because I can’t work to support myself. I hate a lot of things, I hate A LOT about myself, but I do love everyone in my life and I wouldn’t trade anyone for anything…well maybe some…for AIR. That was a joke.

This isn’t a pity party you were invited to. This is my thoughts, my sanity trying to hold itself together and since you’re kind enough to stop and listen I want to say thank you. Thank you to all who are there for me and to those who help occupy my mind and try to make me feel better. I am not crying anymore, I am just simply trying to breathe and get through each day. I am eating healthy, which is a plus, but these steroids makes you gain weight…HA HA HA FUCK. Still I am eating the best I can, I am seeing the doctor hopefully within a few days, need to report any attacks. I am going to smile and be positive because as bad as this is for me, its just as terrible for my family. I wish things would change, I wish I had the ability at the moment to MAKE the change, but all I am able to do it try and breathe.

Breathe…easier said than done.

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Asthma & Many Thanks

I know, sometimes, things don’t go our way
And it seems that it gets harder everyday
You wish and hope that it’s all a dream
These ineffable feelings urge you to scream

You sit and wonder if anyone will care
These thoughts of yours, I cannot bear
I’m your friend and know that I’m always here
There’s nothing in me that you have to fear

The last thing I want is for you to be down
I want to see you smile, get rid of that frown
I love you too much to see you in pain
I’ll do all I can, I will not complain

I’ll give you everything I have to lend
I’ll be that person whom you can depend
You just have to ask me, don’t turn away
have a little faith, and it will all be okay

By ROLO

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Acute exacerbation of COPD also known as acute exacerbations of chronic bronchitis (AECB) is a sudden worsening of COPD symptoms (shortness of breath, quantity and color of phlegm) that typically lasts for several days. It may be triggered by an infection with bacteria or viruses or by environmental pollutants.

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This is what I have been fighting with these last few months. So many people have asked me what is wrong and what is happening. This is what is happening. Along with this, I keep getting infections and keep needing an assortment of different antibiotics to mend it. I am on very high doses os steroids and medication that helps with the steroids. It just seems like a never ending battle. I know that THERE ARE SO MANY who are in a much worse predicament than me and I am not looking for pity. I just need to get this out, I need to talk and vent because in my lifetime, I have never EVER been this bad before. Because of this illness I am unable to work, can’t go outside and mingle with family, can’t go out into public, can’t shop, can’t drive, can hardly do anything but stay in my room and watch TV and play games and….write….which is what I am doing at the moment while I have my breathing machine in my mouth.

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Here I am! I have spurts where I get very depressed and cry on occasion. I mean who wouldn’t right? This fucking sucks! pardon me. The fights with medication and the doctors who say one thing and believe another. Its another battle that weakens me and makes me so upset. If you’ve ever been in this situation that YOU know personally how terrible it can be. I also don’t have insurance and am trying to get there help I need to try and take care off myself during this time. It’s just a never-ending loop, a annoying melody that is constantly on repeat and once it ends….here comes another infection and another NEW medication. As I said in my previous blog about life being so precious….will it certainly is. People die from severe asthma and I won’t lie a few on the medications I was on…COULD HAVE killed me one doctor said and immediately  took me off of it. I have never really asked for help or been one to reach out my hand, but these last few weeks I have and to those who have offered help and prayers, thank you from the bottom of my heart.

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I am going to go now, i can only sit up int his chair for so long before the pain starts. I wanted to get this out and offer my love and thanks and also let people know what is happening. We are trying to see a new doctor next month and have a treatment plan at the moment. Things are so hard and so upsetting. I can’t even say how lonely I am, but I want to say thank you to my family for being there and taking care of me the best they can and also to my friends who are always there and always so kind. I love you.

I feel lucky to have found you-
A friend that is so kind and true;

To lift me up when I am down,
and make me smile when I frown.

It’s hard to find the words to say
just how much I care.

But these will have to do:

Thank you
Thank you
Thank you,

(From the bottom of my heart.)