bossdays

[bossdays]

Clouded

Hello world. It's been a few days since I posted anything. You know those days when you feel like you have a lot going on but, in all reality, you really don't? That's exactly what my life has been like the past week. I'll wake up and 'feel' like I'm just so busy, but the vast emptiness of my world just feels covered in these billowy clouds.

I've often wondered about clouds.

On average, they move anywhere from 30-120 miles per hour but when you look up at them, they look like they are moving painstakingly slow. You often catch rays of light pushing its way through or you see a bit of separation that makes them almost look like old crusted mashed potatoes. I mean, I don't think i realized how much time I actually spend just starting up at these things. So cryptic but also providing a level of clarity because they are right in your face. They don't hide behind masks like most people do. They are what they are, unapologetically. Nothing else could be so simple.

I daydreamed yesterday that I lived my life as a cloud. I floated over one continent one day and then the middle of the ocean the next. I absorbed heat and protected humans from the blaring stare of the sun all while soaking up bits of precipitation and bloating from the amount of moisture I carried in my arms before off-loading it in some random place. A weatherman somewhere in the world, predicting my every move before I even know I'm about to make it. I imagine that must be frustrating if you were a cloud. Would they hold back raining out of spite? Just because some random man or woman says I'm going to share my salty tears with the world all to have them shoved back in my face by the water vapor I can't help but to pass through?

Life would be simple. I'd float, being ever so predictable. Changing my shape with the many different attitudes of the wind. Knowing that nothing is certain. The forever traveler.

[bossdays]

Slight pain

Today, started like any other day. I woke up, brushed my teeth, washed my face, got ready for the day. I felt just fine, as if Lupus was something that I had read in a book and was a distant memory.

Literally out of nowhere, I took a step and had a sharp pain in my right knee. Now, I can say with dealing with this illness over the past decade, random aches and pains just come with the territory. It's nothing I say I can't handle but it does make simple tasks throughout the day a bit more challenging. Just walking up a flight of stairs makes things seem worse than they might actually be.

Every step felt like someone was taking a needle and slowly pushing it into the side of my kneecap. The problem with chronic pain is that on the outside, to everyone looking in, it looks like you are fine. Nothing is wrong at all. On the inside however, my body is screaming in agony. I put on a brave face most days because I could complain non-stop about what I am feeling but it wouldn't make a difference. Would it make someone treat me like a glass house? Would they take one look at me and instantly understand the daily struggle of just putting on clothes or fixing myself something to eat? Would they see that my joints feel like they are on fire? Would they see the reversed tears streaming down my face creating a deep puddle at the pit of my stomach? Most will probably look at me and think that I am over-exaggerating. Sometimes I can put on a brave face and push through but if im being honest, most days I just feel like curling up in a ball under my blankets in an attempt to cry the pain away. Even with pain meds, it only dulls the pain so that I can somewhat function. Nothing takes it away. I am slowly becoming the strongest person I know.

[bossdays]

I have often looked at the speed of my life in slow motion. Small events, constantly merging with big moments all happening piece by piece right before my eyes. The day I found out I had Lupus, everything changed. Granted, I never took it seriously, at least when it first started. I took my diagnosis as a hit on the chin. A 'tag, you're it' message from God. I brushed it off like dust on a porch, thinking that this was just something that I had to deal with now but not seeing how much it would change the course of my life.

In those first moments, I felt a wave of different emotions. Anger, for God giving me a disease with no cure. Confusion, with not knowing what my next steps would possibly be dealing with so many unknown factors. Sadness, because there was nothing I could do to change my diagnosis.

It started with spells of fainting. No matter how hard I tried, I couldn't stop it. Just stepping outside sometimes, I'd feel lightheaded, and the sun made my skin feel like it was on fire with no possible way to cool off. I got rashes quicker than air escaping my lungs. I was in and out of the hospital. Nurses and doctors often looking at my symptoms and saying that it didn't look like anything was actually wrong all while I knew something just wasn't right. At times, I would look at their faces and they would look at me and I would get this feeling like they thought I was being dramatic or faking it just to get medicine. Those looks were gut punches for sure. It wasn't until I went in complaining about pain around my hernia and was down to a weight of 92 pounds that they began to take me seriously. No matter how much pain medicine I received, it would never make anything feel better. I was finally admitted and paid attention to. I was kept longer because going to the bathroom proved to be a difficult task. So many tests were ran. My family medical history, combed through with a fine tooth comb. When the diagnosis came, multiple doctors came into the room, surrounding me on all sides and gave me the news. They looked so hurt to tell me that this was now going to be my life. They offered support through recommendations of doctors I could go to for follow up treatment.

If someone had asked me how I believed my life would go, I would have told them that I would be happy and healthy and doing what I had assumed most adults lived. Going to work, making money to survive, hanging out with friends and family, taking trips, maybe even a pet or two all while being covered with the clouds of bills and other responsibilities. I never thought I would have to change my entire lifestyle.

It has been a journey for sure to say the least. I often look at my life as one of those old goosebumps books where you could choose what chapter you would go to next and see where the story would go with all the anticipation in the world. Nothing made sense, but then again what in life does. #Lupus