LIVING WITH LUPUS | Autumn
This is my Lupus story.
To all my autoimmune brothers and sisters out there. I know that you are struggling just to make it through the day, I feel you.
My name is Autumn and Systemic Lupus lives with me. I was diagnosed with SLE in 2006, on October the 8th. I remember the Rheumatologist finally said the words (that I already knew). “You have lupus!” It felt like an echo all around me. I do have to admit that a part of me felt relieved that finally a diagnosis after 2 years of constant blood work and doctor and specialist appointments. Not to mention losing all of my body hair from head to toe. This bizarre rash that would come and go without warning. To this day I wonder how I survived, I was a young mother of 3 active young boys. We were in everything from school, sports, extracurricular and summer programs. I thought I was a super mom until I wasn’t anymore. I went from coaching, helping with homework and school projects, to driving to hockey 3 hours away. “But don’t be late for kung-fu.” “Oh no I forgot it was my turn to bring the snacks!”
Ughhh…the exhaustion was overwhelming but I kept going until I couldn’t go anymore.’
What you don’t know is that I moved to Canada because of marriage. I left everything I knew in the U.S.A. therefore I had no support network, I didn’t have any family or friends. I had my children which is who I got up for everyday, even the days that my body ached with every step I took. All I wanted to do was crawl back into my warm bed. I couldn’t let anyone see, especially my boys, at least not anymore than they already had seen. That meant I lived with lupus in silence.
I tried to hide my pain as much as I could, but I have learned that you will always hit a wall eventually. Holy cow did I ever hit a wall!
Lupus was winning. It put me in a hospital bed in my living room with nurses coming over day and night. I had mouth ulcers so severe that the nurse had to cauterize my tongue everyday. I became severely anemic to the point where I was receiving iron shots every week. The doctor put me on a high dose prednisone, so high that my adrenal gland stopped working and I developed Cushing syndrome, “really ” was all I could say. My bladder became neurogenic so I had to self-catheter several times a day, which of course because my immune system is too busy attacking me, I got infection after infection. My already sick body just couldn’t fight anything off. Infection after infection gave me many hospital stays.
Doctors put me on medication after medication. Because of all the medications my stomach became “lazy”. That’s when the constant vomiting began. I was bald, my kidneys and bladder were not working properly.I had to eat baby food and was confined to a hospital bed, I kept thinking, “Could it get any worse?” I have to be honest before lupus, I believed that I was a strong woman that nothing could bring me down. I was wrong again, lupus had me in its clutches and there was nothing I could do about it.
Even my family believed I couldn’t possibly last much longer.
One day the sun was so bright it was beautiful. I was sitting in my bed in the hospital that I had been in for 2 weeks. That’s when all 3 of my children walked in to visit me. They walked in together like the young men they had become. There was something special about that visit. I could see in their eyes they were scared but didn’t say anything. That’s when I realized I had taught them to be silent. I could see the hurt and the pain that they were trying to hide from me. I was so busy hiding my pain that I didn’t notice that my children saw everything including my pain. My silence only caused them more pain.
It was then that I decided that I was no longer going to be silent. I returned home from the hospital, left my husband of 20+ years and I stood tall with my head held high because I am a warrior. I will not give in, lupus will not win. From that day forward my children will see me fight to be here.
I will not just lay down and die if I go, it will be kicking and screaming because the support that I thought I needed so badly was always there for me and my children are all grown and have families of their own. I am in remission for the most part, gastroparesis is what affects me the most today. I know when I have to rest and stop what I am doing. I met the love of my life Ringo, he knew from day one that I have lupus and he has supported me every step of the way.
Yes, he is the light when it is dark and as for my children they will always be the 3 young men that inspired this lupus warrior. For anyone out there that has lupus, or any other illness, I have a piece of advice for you; don’t ever believe you have to live with lupus, think of it as lupus has to live with you and you are a Warrior.