You my friend are a WINNER!!! C’mon step right up and claim your prize. Sorry it’s not a million dollars, not a trip to an exotic island or even a talk dark and handsome man to call your own. You my friend are being gifted with Lupus; an autoimmune disease, which means that the body’s natural defense system (immune system) attacks its own tissues instead of attacking foreign substances like bacteria and viruses. This causes inflammation. Inflammation causes swelling, pain, and tissue damage throughout the body. If you develop severe lupus, you may have problems with your kidneys, heart, lungs, nervous system, or blood cells. And as a free gift along with your prize, you get a 8-pill cocktail every day, extreme fatigue, joint and muscle pain, body stiffness, skin rashes, sensitivity to light, migraines so intense they cause you to vomit, rapid changes in weight, anemia and huge dose of depression and anxiety.
October 16th, I walked into another doctor’s appointment with no real expectations. I just assumed I would go in and he’d have no updates and would simply add another pill or take more blood. To my dismay the conversation went a little different than expected. There I sat across from my doctor. He turned with a large grin and said “we have a diagnosis”. My heart skipped a beat. Finally, after 7 months of nothing, I was going to get something to remedy the pain, the confusion, the disappointment I had felt at every doctor’s appointment. I just knew he was going to give me a 90-day supplement and everything would disappear as if it never happened. Then without hesitation, he said “you have Lupus & fibromyalgia”. I instantly died emotionally. Before I could catch myself, the tears began to fall. Coldly, he kept talking as if my tears met nothing. “What does that mean, how do we fix it? I asked”. He never flinched, never changed emotions, and said; your current state of pain and fatigue is lifelong. The medication will help you manage those symptoms, but this is your life….Forever. At that moment, everything I knew, everything I wanted to accomplished, everything set before me instantly felt unachievable, unreachable, unattainable. At this point I was sobbing uncontrollably. He passed me a tissue and kept talking. Let’s talk about your medication so you can be prepared for life with Lupus. He was so cold, so unattached I thought. Why didn’t he hurt like me, why wasn’t he emotionally wrecked by the thought of this 30 year old woman who only 7 months ago was healthy, vibrant, and full of life was now riddled with a life changing unexplainable disease? Why was he so damn cold? Why hadn’t he told me to bring a family member or friend? Why me?
This pill will help with your metabolism, so take that every day. That pill reduces the inflammation, but it deteriorates your bones, potentially could give you diabetes, increases your appetite and makes you either gain or lose weight…take three of those. This one here is for your fibromyalgia, that should reduce the nerve shocking feeling…you’ll need two of those and finally, take two of this pill here because that will help to keep the Lupus from spreading to your organs. Just remember it could potentially cause blindness, so you’ll need an eye exam twice a year and if you are considering having children, be mindful it could cause heart problems for the fetus. Any questions….? I had loads of questions, tons of things I didn’t understand; but I couldn’t form the words, I couldn’t stop crying long enough to say anything, so I just shook my head no. As if he was rushing to another appointment, he walked me to the receptionist desk and said we don’t need to reschedule a follow-up…good luck. That 15 minute doctor’s appointment was one of the loneliest, coldest, emptiest moments of my life. I paid my co-pay, walked to the car and lost it. I was afraid to pull out of the parking lot. I didn’t trust myself with the news. I knew if I started that car and pulled out, I was going to keep going, right into on-going traffic. Because at that moment, death would have been better than accepting I had lupus.
I was mad, confused, disappointed, angry and a host of other emotions. I cried and cried and when I thought I had nothing else, cried some more. I begged, bargained and pleaded with God. I’d do anything if he’d take it away. I immediately went through the five stages of grief. Because in my mind something had died that day in the doctor’s office:
Denial & Isolation – There was no way I had Lupus, it was wrong. Even as I stared at the numbers that clearly indicated I was off the charts with my lupus, I didn’t believe it. I shut down and didn’t want anyone to offer hope or consolation because that would force me to accept I had lupus…and quite frankly in my head if I didn’t believe it, it wasn’t true.
Anger – Ha!!! Is there something worse than that, because I was it! I was mad, angry and enraged. Why did it have to be me? Wasn’t there someone else out there that “deserved” it more than me (what a selfish and disappointing mindset I had for a short moment). This was so unfair and I felt if I got mad enough, God would take it away…what a thought!
Bargaining – I know God just laughed. I was willing to offer anything if he’d just agree to take this away. I listed all the “great” things I had done in my life and for other people as a bargaining chip that I was “too good” to receive a diagnosis like Lupus. I promised, bargained, begged and pleaded with God. I probably should have considered a career in sales with the way I was selling me getting rid of Lupus. Needless to say, it didn’t work.
Depression – this has been the longest stage. I’m not going to lie to you. I’m still here. There is a constant struggle between my depression and the final stage “Acceptance”. And just when I think I have finally come to terms with my Lupus, I fall into a deep dark place of depression. There aren’t enough words, hugs and I understands. It’s a battle that I have to fight alone. I make sure I feed my spirit the word daily, pray often and reduce the negatives in my life. Some days are good, others are bad and a few are worse. But I make a promise that I will give 100% everyday no matter what. I’m convinced those positive seeds will take root and I will be at the stage of acceptance before I know it.
They say people with Lupus often play down their symptoms in attempt to reduce the “burden” they feel they place on their family members and friends. I know this to be very true. I don’t want to complain, be a bother or be the reason we “can’t” do certain things. But honestly I just want to scream, it’s HARD! Life with Lupus is HARD. I cry a lot, I am in constant excoriating pain. I gag every time I have to swallow those 8 pills. I get tired from simple things like putting the groceries away. My fatigue feels like I just ran a 10k full speed. My migraines are so debilitating I can’t do anything but be in the darkest room with no noise and force myself to go to sleep. Sometimes my joint pain is so severe I can’t write, open things like a bottle of water or hold a piece of paper. That I shake uncontrollably because that’s a side effect of my medication. Some morning I wake up and my hands are crippled. That my back pain feels like I got kicked with steel toe boots. I don’t sleep through the night because either the pain is severe or the meds keep me up. I want to say I’m embarrassed, I feel like a burden and I’m terrified. But I don’t, I just slap on a smile and pray that today will be a great day in Lupus Land.
I won’t tell you how to feel or comprehend what you’ve just read. It’s my destiny, it’s my way to inspire, it’s how God is going to use me. He didn’t promise me a journey of sunny days, great weather and strawberries for the picking. In fact he was clear that there would be many hard days, but that he would NEVER leave me or FORSAKE me. So even in the darkest, loneliest, emotional times in Lupus Land, God is there, quietly rocking me in his arms. This part of the journey is simply a building of Faith. You can’t expect everyone to understand or sympathize with your journey. This thing is “bigger than Nino Brown” (New Jack City reference). In essence, it is a reminder that you don’t get to pick how you inspire. God uses you in the manner in which he knows you will have the greatest impact. I read somewhere you never know how strong you are until being strong is your only option. I don’t see myself as strong, I feel like I give up at least 1000 times a day. But I have a great support system that reminds me daily that I am a BEAST…that despite everything I am rocking this thing like Christian Louboutins on the red carpet. So here I am, Erica, Don Diva, a daughter, a sister, a friend, a Lupie (person with Lupus), who’s about to change the face of Lupus. They gave the wrong person this diagnosis! I really just want to inspire! LEGGO!!!
Until next time…..