Dr. Who and Ice Cream Will Always Be Waiting After My Long Rides On The Pain Train

Blogger: Demetrious McMullen – “Ruler of Androdgeny”

Sometimes we feel helpless. I have been feeling helpless for years. Occasionally, I feel powerful, but it never lasts. Right now it has been hell. I left college and moved. I’m now taking online courses and after moving, needed to change how I got my infusions. Without a primary care in the area, there’s no way for me to get it in a hospital (the doctor prescribing must have privileges to the facility). I thought about home infusions. I’m getting this medication for the rest of my life, so why not? Who wants to spend a their time in a hospital once a month?
So, we first had to wait for my Port-A-Cath to heal. I got it placed in early January. Then, the insurance company gave me a list of infusion companies. Every single one did not work out. The insurance could not provide me with one infusion company that was compatible. After finally finding one on my own, we had to get a prior authorization. After waiting almost two weeks, it got denied. I don’t get this. It’s CHEAPER for insurance to provide home infusions. I have been getting these for a while in hospitals. Okay, waste more money if that’s what you really want! The thing is, I don’t know where else they would expect me to get my infusions without the access to a nearby infusion center. It has been almost 3 months since my last infusion and they are meant to be monthly. I haven’t left the house in over three weeks. It hurts. I don’t have all of my medication, I don’t have the correct mobility tools, and I don’t have much left in me. My C-reactive protein was THIRTEEN! That is not good.
I’ve been trying to raise money through a GoFundMe. The insurance only covers specific wheelchairs and the type that I need is not covered. It seems as if insurance companies want to ruin everyone’s lives. I can’t get my new wheelchair, I can’t get my infusions, what will be next? The GoFundMe is called “Help me be mobile” and it has a Facebook page as well. Yes, I shamelessly advertised my page that begs for money. The pain, dizziness, numbness, and weakness all gets unbearable and I can’t even walk in the morning.
The pain is difficult to describe. One thing I can tell you is that I have experienced the taste of pain. I have no way of accurately portraying this feeling to someone else and I don’t know how successful this will be, but I’m going to try to poem it out. It’ll be about the taste of pain and anything else that comes out. I think it’s important to open up about these things and let them out 🙂
Pain
It tastes like metal that has been bent;
Metal left out in the rain;
Metal rusty.
Hospital smells and dentist offices. The grinding of teeth.
Knots in my cheeks
Jaw tension.
Inflammation.
Fire.
How am I? Stop asking. I’m tired.
I’m freezing, yet my body is hot.
Bruises on my knees from
walking.
Pain in my jaw from
talking.
Sore throat.
Please, no more coughing.
Asthma has a jam.
I can’t breathe. Damn!!
My chest hurts.
My back hurts.
My everything hurts.
My heart hurts.
I am hurt.
Why is my body fucking attacking itself?
Dry eyes,
Dry mouth,
I need to cry,
But it is so dry.
Another diagnosis??
Secondary Sjogren’s syndrome
Dry dry dry!!
Eye abrasion
Never enough hydration.
I need water. I need to pee.
I cant walk. Someone help me.
I can’t use my hands to write.
My joints are in a battlefield. They fight.
Fighting the fire without any help.
I can’t hear them yelp,
But I know they are losing.
I can feel it in my bones.
I can taste the fire. I can taste the rust.
I need water. I need to pee.
I fall down. My body hates me.
I can joke all I want, but I still taste the pain.
I can joke all I want, but I want to live and remain sane.
I wake up and the first thing I think is about what is hurting. I absolutely always think about what medications I have to take and what pain I’m feeling. I am hit with pain as soon as I move, most of the time having a lack of feeling in some limbs.
Do you know how many joints the human body has? I’m not sure, but I can feel them all. I have never in my life been more aware of what and where a joint is. I have never been more aware of the joints in a person’s hand. I’m going to count right now how many moving parts of my hand I can see. Thirty in my two hands! I can feel them all scream.
If they could talk, they may say “I’m bruising!! Help!” Or “my apartment is on fire! I need the fire department before I burn alive!”
Inflammation is the fire… get it? Because they all have their own little apartments… in my hand. Okay, maybe I’m not funny, but I tried! It’s the thought that counts. What I’m trying to say is that there may not be a way to even explain how much pain I am experiencing right now, but I can try to joke about it!
In contrast to what I just said, I said in my poem that I could joke all I want, but I can still feel the pain and I want to live and remain sane. I believe that jokes are wonderful. I think they make everyone happier. Although, after nearly three months without my medication (Remicade) for Ankylosing Spondylitis, typical asthma issues, more medications for yet another autoimmune disease, and horrible GI issues, I’m finding it hard to do everything.
I need to see a pulmanologist again, a new neurologist, and a GI doctor. It’s overwhelming, especially with how the insurance has been lately. I wish that I had everything I needed. I could be so much healthier and be doing so much more than I am now. It’s like there is a beam of sunlight that is about to hit me with it’s warmth, but it’s just not quite here yet. I love to joke, I really do. It lightens situations, but now is a hard time to joke.
I want to say something. I want to have a blog that ends with a positive message, even after all of the bad information and emotion.
This is what I know: the positives!
Support.
I have support! I have pain and I have these conditions, but I have help.
My fiancee, Lindsay helps me everyday with tasks. Every single day is a day that she takes time to help take care of me.
We have our dog, Ziggy (he is a cat, but a dog at heart) that follows us everywhere in the home and is constantly asking for attention.
I also have my friends and family to talk to. I can rely on them whenever I need help.
I have something magical… doctor who and ice cream. That is one of the best combinations to generate the feeling of betters. Sit back, watch the television, and eat the SUGAR!
Back to the seriousness, I also know that I have tools/methods like heating pads and ice packs, hot showers and vaporub, television and video games, music and art, photography and poety, a dog that meows and a fantastic fiancée!
I can utilize all of these things in my life to ask for help, destress, ease a little pain, let out my negative energy, cry, scream, and most importantly, take care of myself. Self care is so important to any person’s health and it is different for all of us! Whatever pains you, autoimmune diseases or that ex that won’t leave you alone because “you’re the one, babe”, we all have a lot of stuff to deal with. Without self care, us fragile humans would break!
Take care of yourselves, everyone. Thanks for being a part of the Reoccurring Emotions…
Or the Daily Feels… Bye! 🙂
—————————————————————————————————————————————–
Dem
Demetrious McMullen is currently a college student. They are taking online courses at Westchester Community College for now, but the future is a slight mystery with many directions to take. They are a human services major now, but used to be a theatre major until taking classes online. Demetrious is a vocalist and pianist. They also play baritone ukulele, guitar, violin, xylophone, djembe, hand percussion, and more! Demetrious is also an actor, photographer, and painter. Demetrious is a caregiver and loves to teach. They want to be a special education teacher one day, and at some point, perform the arts they love to do. They want to combine their knowledge from music, theatre, caregiving, and human services to become the ULTIMATE teacher for the young students with special needs in this world. Demetrious was a student in special education programs and had experiences with teachers who didn’t expect much from them. Some teachers spoke down to the students in class. Dem wants to tell their students every day that they have potential!!
Demetrious is part of the LGBTQ community. They are Pansexual and Trans-male/Androgynous and uses pronouns they/them or he/him. Demetrious is chronically ill and two of their most debilitating conditions are Ankylosing Spondylitis and Asthma. They only listed those two, because they don’t want you to be reading this all day
Demetrious lives with their chronic illness every day and it is tough, but giving up is not an option. Chronic illness will not win! Demetrious’ plan is to break stereotypes and exist freely. Let’s break the gender binary, tell ALL of the stories, and shut down fallacies about people with disabilities!

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