Lupus Warrior: I Choose my Health

Lupus affects over 5 million people worldwide, yet it is constantly misdiagnosed and misunderstood.

“She made broken look beautiful and strong look invincible. She walked with the Universe on her shoulders and made it look like a pair of wings.” ~ Ariana Dancu

Balancing my Spoons for my Health

Lupus…a chronic illness that sometimes takes year to diagnose and can be confused for other illnesses. I was not officially diagnosed until age 20, after suffering years as child with unexplained illnesses and hospital stays. I am also part of the few who face this illness without health insurance, which means I am my own doctor most of the time. I must know when my body needs rest and recovery. Things like stress, bad diet and lack of sleep (which is hilarious considering insomnia is a side effect) can cause me to go into flares. Typically, when I flare, I continue my day, get up, clean house, go to work, make dinner and manage everything I need to do. This is where the spoon theory comes in.

The Spoon Theory was created by Christine Miserandino, who suffers from Lupus. She was trying to explain to a friend how the illness works, or shall I say robs us of energy to do simple tasks. You start off with a handful of spoons and as the day progresses you have to turn in a spoon for activities such as getting dressed, going to work, cleaning, dishes, etc. and if you use all of your spoons you are left drained, exhausted mentally and physically. This leaves you unable to finish tasks or do things that are enjoyable to you. Now we enter recovery phase, which can sometimes be hindered by the inability to do anything. This requires rest and if you do not rest you will find you are now coming down with the Lupus flu, that one where you feel like you have been hit by a bus with allow grade fever but you don’t actually have the flu. Yea, it sucks bad!

So, us spoonies, we rely on listening to our bodies. While many are on medications, they themselves can cause side effects that just amplify our loss of spoons. Then, there are the few of us without insurance who have rusted spoons or broken plastic spoons that we try and negotiate how much we can do before surrendering them. I am the in that class, I must know when to rest, when to say no and when to fight through it trying to keep myself out of the hospital. In early 2019, I got out of a relationship that sucked the life out of me emotionally as most broken relationships do, then I moved 3 hours away from everything I knew, found a new job and well essentially was on my own. I ended up in a horrible flare where my kidneys shut down basically, my blood sugar was so low they could not understand why I wasn’t in a comma at the hospital. I was told I have Crohn’s (false diagnoses) and then they wanted a colonoscopy and endoscopy to determine. They tested me for celiac, nope do not have that either. My Dr said my lupus was in an active flare and this was all a result. It was discovered I also had Systemic Sclerosis and my colon was inflamed causing deferred pain to my hips and causing my kidneys to not work. I spent a week in the hospital and months trying to bounce back.

I still suffer this day to the horrible hip pain and bloated belly; lack of sleep and I have been battling a cold/sinus infection since November! All while tying to work a stressful job that claimed to understand the illness, but I was not allowed to take time to recover. I was in a vicious cycle of spending my spoons, losing my spoons and trying to find new ones to steal. I had to make a choice, for my health…I needed to find a job that was less demanding on my mental and emotional health. Possibly find one with insurance option as well. I was getting worse in the last year and something had to give.

I had to choose my health and a whole lotta prayer to make it through this decision. I went all day without hip pain or stomach pain. I still have my endless cold but that will take time. I want to hug each and every person I come across that has Lupus but it truly is the most misunderstood illness that tries to kill us and we pretend all is ok, smile and go about our day…counting spoons. We function for the most part as walking zombies with fake smiles and we keep our complaints to ourselves. So, if you do hear us complaining it is because even, we can’t deal with the pain anymore.

So, for those who don’t understand and want to label us unreliable should honestly be thankful they don’t have to go through this type of illness and certainly shouldn’t compare illnesses, this is not like having high blood pressure or a food intolerance. This is literally us battling our own bodies to survive because our cells got confused and want to attack each other. We try each and everyday to be normal and function while going on two hours combined sleep or battling and active flare. We should also not feel like we can’t choose our health with decisions we make by being judged from others who truly have no idea what it is like to be a warrior. We don’t want sympathy we want acceptance that we are going through the battle for our life and sometimes we feel like we are losing. So instead of judging offer a spoon full of help or support.