Diary of a Mad Lupus Warrior
Nono Osuji was in the prime of her life, 28 years old, when she was diagnosed with Lupus, a debilitating autoimmune disease that affects more than 1.5 million Americans. She regularly shares her thoughts on what it's like to live with the disease on her blog The Lupus Diaries. Here are some excerpts from her blog:
"I called the first rheumatologist on the list, he had a Park Avenue address, fancy, I thought. I decided that someone who treated the likes of the Park Avenue elite would offer superior care and resources to me, and he took my insurance; so I made the appointment. While I waited for the appointment that was going to be early the following week, I went back to the Internet to research these mixed connective tissue diseases and determine which one I would prefer having. After an extensive look at every medical website from the mayo clinic to WebMD, I decided that I could live with Sjögren’s Syndrome. They all seemed to suck in one way or the other, and since I knew that I didn’t want rheumatoid arthritis or lupus for that matter, I settled for Sjögren’s syndrome."
two weeks later
"I had given up on the Sjögren’s Syndrome idea after the dermatologist appointment, and had settled on the fact that I probably had lupus, I was just unsure if I had discoid or systemic. During the next two weeks my hair started falling out. It first started four days before my follow-up rheumatologist appointment. I was in the shower, and while I was washing my hair, thick clumps of hair started coming out as I ran my hands through my hair. I remember going completely numb in the shower, and then I began shaking uncontrollably and sobbing. I tried to gather all of the hair that was falling out before it fell into the drain. I just stared at the clump of hair in my hand, it was about the size of a mouse; I felt defeated. I ran my hands through my hair again and more hair came out, it just wouldn’t stop. I finally decided to stop touching my hair and quickly left the bathroom with some leave in conditioner in my hair and decided to let it air dry. I stayed in bed for the rest of the day and the next day. By the time my appointment rolled around I was in a, 'I don’t give a damn' mood, and just wanted to hear the results.
The doctor came in and ushered me into his office to talk about my results; this couldn’t be good. The one thing I did appreciate was that he did not beat around the bush; he could probably sense my anxiety and irritation. He confirmed that I did have systemic lupus erthyathamous and that it was the reason why I had been feeling the way I had been for so many months. Right now it was mostly affecting my skin, joints, blood and hair, but he did see some kidney involvement and he wanted me to see a kidney specialist."
As I walked out of the office it hit me, Ok, so it is lupus, now what?"
"As I sit here and look at my swollen body, think of my scarred kidneys, my shopping bag full of medication, my calendar filled with numerous doctor’s appointments, and my fragile emotional state, I can’t help but to ask God, “Why me?” Why is this happening to me? I have been healthy my whole life then in my prime, I am hit with a chronic disease that is still a mystery to the medical profession and is wreaking havoc on my body and my life. I feel left out of the life I see others living, the life I thought I would have by now. My social media timeline is filled with my friends and former classmates - all in their late twenties to early thirties - getting married, having kids, getting advanced degrees, taking their careers to the next level, getting pilots picked up, writing books and traveling. While my life seems to be at a standstill, with every step I make forward, lupus always seems to pull me two steps back. I feel like I am in a chronic Purgatory and my future looks grim, I can’t even begin to think of a normal future with husband and kids. It so easy for me to feel defeated when I hear the doctors talk about me “never having normal kidney function” or often saying the words: cytoxan, dialysis, transplant, and infertility. I am actually considering freezing my eggs. I just sit back and ask myself how did my life get to this? What is the purpose of this? Life is hard, it has its challenges, but what do we do when it seems like life is giving us more than we can handle?
For me the solution is looking beyond myself, and my current situation and finding comfort in prayer and meditation. There is power in prayer. I have seen the power of the ultimate physician when mortal doctors can only sit back in awe of His work. I started to see this disease not as something to destroy me, but to help me rebuild others and myself.
That is what thelupusdiaries.com has been for me, a light that gives me hope in the midst of my darkness, a simple answer to my question, “Why me?” and the simple response is “ Why not me?” I am a storyteller by nature, a thespian by birth, and often time art imitates life, and God has given me a story to write that has taken me from NY to DC, to Bosnia to Nigeria, Texas and so many places in between. He has promised me a happy ending that I must believe in, despite what I see now, and a platform with the talent, to share with others and encourage them to do the same. Why not me? I have seen how much I have grown not only spiritually but also emotionally and mentally as a person. I am using my outspokenness for a worthy cause, and have become a better advocate for myself when dealing with my own healthcare in the process. My empathy and compassion for others has evolved, and I now consider the person instead of their situation. I have completely changed my eating habits and outlook on health and life, and I am not sure that would have happened without this diagnosis. I am more determined to go after and achieve my goals in life, because when faced with your own mortality, you realize that tomorrow is not promised to anyone. So why am I procrastinating to do anything that I want or have been convicted to do. Why not me? Most importantly I have learned that no doctor has the last say over my life, God does."
Hope and a Future
"For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. - Jeremiah 29:11
Believe Him, be obedient and trust that things will turn out better than you ever could have imagined. I write this to encourage you with whatever you are going through that this is just a season, but seasons do change. I know that when you are going through the pain and agony the last thing you want to hear is, this too shall pass. So I say embrace and accept where you are, cry if you want to cry, scream if you want to, question God. I did all of it and a lot of cursing and tantrum throwing, but when the reality of my situation set in, I decided to choose hope, faith and God. And it is well with my soul."