Lupus is an autoimmune disease that can cause a variety of symptoms, such as joint pain, swelling and excessive fatigue. These symptoms often come and go in flares that can be difficult both to manage and to treat. Lupus is not a well understood condition, but we have the honor here at the Wellness Center to learn more directly from a source. Our very own Customer Service Representative Shanin has lived with lupus for many years and has decided to share her story with us in order to raise awareness.
My Lupus Story
By Shanin Lombardo-Mitchell
Hi, my name is Shanin and I have a story. Not a story I really like to tell or ever wanted to tell, but I have lupus. Looking back, I had been symptomatic for years always brushing things off as getting older or overextending. For those who know me, if I am not doing fifteen things at once, then it is an easy day. I got the flu in mid-November of 2015. It wasn’t a particularly bad flu, just the flu, which I hadn’t had in years. A week later the flu came back. And 6 days later again. And again, and again. For the next 3 months every 6-7 days I would get those same symptoms: low fever, horrible aches and pains, keeping nothing down, and horrible brain fog. Once I got into see a Doctor, I was barely holding a conversation and definitely had trouble completing sentences. All I wanted to do was sleep and no matter how much I slept it was never enough. It was different than simply feeling tired; it was more like I hadn’t slept at all in days. The doctors ran test after test and put me on so many different medications. “Take this for 3 weeks and come back and we will run more tests!” was all I heard for the next year. At one point I had several appointments each week with different specialists. During this timeframe, new symptoms would pop up continuously – it was unbelievable. I felt ridiculous telling the doctors, “Well this week I am ….” My symptoms were so overwhelming that I eventually needed to keep a journal and definitely kept most to myself. I felt like people would look at me like a hypochondriac.
Here is a list of some of the things I faced every day:
Joint pain, brain fog (not like forgetfulness but like I forgot my bosses name of 4 years while speaking to him), inflammation, intestinal issues, food allergies (sometimes new ones overnight), inability to drive, hold a conversation, or make a shopping list, fingers so cold they turned blue in 75-degree weather, lung scarring, inability to regulate body temperature, tremors, insomnia, sun sensitivity, and complete exhaustion.
And the list goes on and on. It wasn’t until I got a rash on my face that we were able to verify it was lupus. On January 3rd, 2017, I was finally diagnosed. And I know it sounds weird, but I was happy about it.
What is Lupus?
Lupus is an autoimmune disease where the body’s immune system cannot tell the difference between healthy tissue and sick tissues and therefore it can attack ANY part of the body. Mine tends to settle in my joints, brain, skin and intestines. I am lucky so far. My organs (knock on wood) are not affected yet. But that could change at a moment’s notice. There is no way to know where my own immune system is going to go next. Lupus warriors deal in flares, which is what an episode is called. A flare can last an hour, a day, a week or longer. When a warrior is without symptoms it is called remission. I pray for remission every day, and some days I get it. Some hours I get it. Flares can happen at anytime, anywhere, for any reason. Remission for most people means it’s gone. Not for lupus warriors. Remission in lupus means symptoms are gone right now. What’s more, is lupus warriors often develop other autoimmune diseases as well. RA, Reynolds’s disease, gluten sensitivity and so on are some of my sub auto-immunities.
Life With Lupus
So why would I be happy to have lupus? I was happy to finally have a diagnosis. It had taken years away from me and now that I know what I am fighting (I am fighting myself, which is kinda weird), I was finally able to put my head around it, even though it was pretty terrifying. I could put together a plan but more than that, I finally didn’t feel like people thought I was a hypochondriac.
“Okay now what?” were the first words out of my mouth (I later cried in the car in the parking lot of the medical center). Meds, blood tests every 6 weeks, less stress, more sleep, no alcohol or garlic and complete life alteration was the response. FOR THE REST OR YOUR LIFE.
I had to make changes. My goal is to live as long and as well as I can with lupus. Be a Lupus Warrior. I got a nutritionist, a rheumatologist, a gastrologist, and a dermatologist. I created a support team so that I can make changes as needed with this unpredictable disease. My life looks a lot different now. I rely on others (something completely foreign to me) and I do not go in the sun for too long (otherwise my skin will break out into a very painful rash). I try not to over stress (work in progress, with 5 kids this is something I work on every day and most days fail, but I am still working on it). I make time to eat (and not a handful of goldfish on the way out the door anymore). Most importantly, I learned to listen to my body and do what it needs (even if it says I have to go to bed before the kids or if the dishes aren’t done). This was the hardest for me since I was always a ‘push through and get it done’ person. There are many times I have thought I was ‘normal’ again and pushed myself into a flare. Listening to my body is something I struggle with every day. I want to do more; I have a lifelong sentence of FOMO.
My typical day starts with waking up earlier than normal to stretch out my hands. They curl at night and sometimes I need my husband to straighten them out, so they stay functional for the day. My son has helped me too – he calls them my sloth hands. Next comes my ankle because lupus has destroyed it (and is in the process of destroying the other). It has been rebuilt but needs TLC in the morning. Depending how I am, I go through daily duties-house, kids, work. Doing tiny things that save my energy or not make things noticeable. I keep notes on everything so I don’t forget anything (before lupus my family used to marvel at the way I could remember everything-birthdays, appointments, memories, schedules and every detail imaginable). I rest after a flight of stairs because it looks like I can’t breathe and am so out of shape 1 flight of stairs knocks me down. I do not eat at potlucks because I am terrified of ingredients. I do not walk right next to someone because I sway when walking and I do not want people to think I am intoxicated (not that I could even have any alcohol due to possible liver failure because of the meds). So, when I walk with people, I stay a little behind. I wear gloves tucked under long sleeves, so people do not notice them.(compression or because my fingers are blue). I always have a sweater with me even in the summer. I wake up in pain (not achy pain, but like I just moved a house pain…sometimes it’s a condo size pain, sometimes it’s a15,000 sq foot house pain). I go to sleep in pain and the settling of my muscles is agonizing. There are times I can’t go on and feel I could pass out if I don’t lie down.
My whole life has to be planned. Things that are too much have to be divided into separate days or done by my family. I have to plan meals just in case we go somewhere where I cannot eat the food. Plan plan plan. I also have to limit myself to what I can do which means saying no sometimes. And I hate saying no. So, I sometimes cry, just for 10 minutes. That’s all that is needed to feel sorry for myself, then I get up and get going. I do grieve my life before and I do get scared of what may come next. There is no cure, only treatments. Treatment consists of lowering my immune system, so my body doesn’t attack itself, and that comes with a whole set of other complications. Basically, I can’t get sick. It would be bad is what they tell me. So, I do everything I can to stay healthy.
Lupus: The Good, The Bad, and the Ugly
The good, the bad and the ugly. That’s how I describe my life with lupus. The ugly part of lupus is all the havoc it is doing to my body. Pain, deterioration, and constant changing of my health is sometimes overwhelmingly unreliable. The bad is the meds and their reactions. The constant fact that it controls every decision and every aspect of my life. The constant planning of “in case I can’t” and the “I can’t”, is what I hate more than anything. But the good. I know it’s weird to say the good of lupus, but to know me is to know I am a bright side of things type of girl. The good is that lupus has taught me to put myself first. To take care of myself. To give up control (still a work in progress). To be okay with imperfection. To rely on others (getting better at this). To not push myself. To be okay with no. To be in the moment. I am not sure that any of this would have happened if I had not gotten lupus. I am not sure I would have ever slowed down or given myself a break. And I am not sure I would have ever had the courage to share. Through finally opening up about my life, I have met some amazing warriors. Having lupus sucks! But I am grateful every day for every day.