Today’s post is about a topic that I rarely feel comfortable talking about: my battle with lupus. The purpose of this post is to bring awareness to this complex autoimmune disorder that can mimic many other illnesses, often making diagnosis quite difficult. Lupus is characterized by inflammation in at least one part of the body and can affect tissues and organs such as the skin, muscles, joints, blood, lungs, heart, kidneys and the brain. Lupus Canada estimates that lupus affects 1:1000 Canadians, primarily women of reproductive age.
I was first diagnosed with lupus at 23 years of age and just a few months after the birth of my second child in 2012. During the early weeks of pregnancy with my son, I suffered quite a severe flare-up which brought on severe swelling of the joints and tissues in my body. The swelling episode left me wearing my husband’s clothing and unable to walk. As the swelling progressed I remember worrying that my then nine-month old daughter was going to be left motherless. ER doctors were stunned by the severity of the swelling and assumed that I had either suffered from a virus or an allergic reaction. I was given an adrenaline shot each time I went into the ER, and a prescription for an EpiPen before being sent to see the hospital’s rheumatologist. The rheumatologist prescribed 50mg of prednisone, a corticosteroid drug, for the duration of the next two months and thankfully the swelling subsided but not before causing some nerve damage in my feet.
After the birth of my son I experienced a few complications. My blood was having a hard time clotting and I was starting to swell at an alarming rate. The swelling caused so much pain that I was unable to breastfeed or even sit up to hold my newborn son. I had a hard time standing and walking as the pain was unbearable. Less than a week after being discharged from hospital with my son, I was back in the ER being prescribed a diuretic and stronger pain medication. Although I didn’t have a flare during my first pregnancy, I did have complications after the premature birth of my daughter, swelling and pain being the worst of it. The swelling was so bad that I couldn’t fit into my maternity clothes when it was time for us to leave the hospital. I was given Percocets for the pain and again it was assumed that I had suffered an allergic reaction most likely to the epidural.
By my son’s birth which occurred without an epidural, I knew whatever I had was definitely more than an allergic reaction and was probably more related to an autoimmune disorder. I started my own research and read in-depth about lupus. My migraines, sensitivity to light, unexplained loss of hair in patches, and issues with my skin all began to make sense as I began connecting my symptoms together. I self-referred myself to a rheumatologist. He immediately sent me for some blood work after spending a great deal of time assessing my symptoms at the time, and making note of all the symptoms that I had experienced over the previous years. It is important to note that symptoms and the severity of symptoms differ from person to person, complicating diagnosis furthermore. A few days later, the blood results confirmed my suspicion and just a few days after that my treatment, a concoction of pills, began.
Although I was relieved to finally have a diagnosis and treatment plan, it was a bittersweet moment as it took some time to come to terms with the whole thing. There was drowsiness, exhaustion, and weight gain, and chronic pain to deal with on top of having to take care of two children just 16 months apart. It was rough getting up for middle-of-the night feedings then waking up early with my daughter who was still not sleeping through the night. It was difficult explaining to extended family why I couldn’t make it to parties and gatherings. It was difficult to accept the fact that the treatment wasn’t a cure but rather a preventative method for possible future flares. For a long time the fear of suffering another severe flare stuck with me, especially when specialists kept telling me how fortunate my son and I were to have survived such an attack as I had suffered.
While dealing with all this, I became slightly obsessed with trying to give my children a “normal” life. I was young and determined and most of all didn’t want to fail as a mom just because I had lupus. I didn’t want my children (or anyone else really) to see what I was struggling with on a daily basis, so some days I over-compensated and overworked myself. I am often praised for my ability to cook but what most people don’t know is that there have been days that cooking or even getting out of bed has been a struggle.
Although I stopped going out with friends and out to family events, I made sure the needs of my children were met to my satisfaction. I wanted to use the energy and good days I had to spend with the two little people that needed and desired it the most. I provided my children with healthy home-cooked meals, helped them learn, played with them, and watched them thrive just as I do now. It gave me the happiness and the sense of fulfillment that I desperately needed at the time. Now that my children are getting older, it has gotten easier to take the time I need to rest without worrying too much about accidents, and falls. My children have grown to understand that sometimes their mother is in pain and sometimes she has to spend hours at appointments. My little ones have become compassionate, understanding and helpful as a result which is wonderful.
Thankfully I have not suffered another significant flare although I still cope with joint and muscle pain on a fairly regular basis. Living with lupus or any chronic illness for that matter is not easy as it takes a lot more to accomplish everyday tasks. When you are a parent, it makes it that much more difficult as you are not only taking care of yourself but those that depend solely on you. My children have been my inspiration during trying times and because of them I have chosen not to let lupus define my life. My experience has taught me to live in the moment, enjoy the little everyday things, and to be more appreciative of life in general. Fortunately with newer and better treatment options and earlier diagnoses, I can attest to the fact that it is very possible to live a productive life. A positive attitude, remaining active, eating healthy and having a support system also goes a long way, whatever your battle may be.
To learn more, visit Lupus Canada.
Feature Image: myhoneysplace.com
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hi i am glad you are able to share this…you must be a strong girl.
As a nurse l know lupus is very challenging. I have done a lot of research on nutrition over the course of years. Definitely give yourself a plant based diet and see how it can improve health.
Hi Sarmini, Thank you for taking the time to offer advice. I am already on a plant-based diet as I am a vegetarian and have been for about 15 years.
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Hi! I could relate to the inflammation part of your pregnancy. My first pregnancy was smooth ride until the start of 8th month when it started with swelling in one ankle to me not able to walk within a week, I had reached out to my ObGyn so many times telling her that I am in pain and she kept saying its normal. Only after a week, I started getting stabbing pain in my groin area, pain in the knee – i saw a Chiro who asked to use a walker and everything changed within days when i became wheel chair bound – not able to walk without support of my husband, not even able to use restroom. My husband changed everything for me – bed mattress (to make it elevated), elevated toilet seat, cushions over sofa. It was very unexpected and painful experience for me and my family(they were shocked to see when they arrived here for delivery time from India). 2 months until I finally delivered and my husband begged doctors to run some tests because 2 days after my delivery the c-section medication wore-off and i was in same pain – MRI revealed I had major inflammatory arthritis of knees, ankle and hip joints. my son is 3.5 years old now, I am doing much better (still on medication) but that period was very tough. I could not bf or do anything for him for around 4 months. I do want to have another child and have consulted doctors but still the thought makes me nervous. I hope I get the courage and positivity to try again!
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