Learning to Accept

 In Links to Lupus News, Story Sharing Project

By Jen Bouquet

When were you first diagnosed with lupus?
April 30, 2008

How long did it take for a correct diagnosis?
8 years

Were you misdiagnosed first?

I was not ‘misdiagnosed’ because I was never given any answer to the pain and fatigue I was experiencing. My journey officially began while I was pregnant with my first child in 1999, my OB discovered I had a positive ANA. He immediately suspected lupus, although at the time I did not have any symptoms. I saw a Rheumatologist throughout my pregnancy as a preventive measure. After successfully delivery a heathy baby, it was recommended that I have labs every year to monitor my bloodwork. I was also told if I ever started experiencing joint pain, fatigue, rashes, etc., to see a doctor right away. I never worried about this and in fact put it out of my mind until shortly after the birth of my second child when I started experiencing chronic fatigue and pain. I would share my symptoms often with my doctors but because I had a 2 year old and an infant the fatigue was often times written off as ‘being a mother.’ This wasn’t fatigue or pain that would come and go but was a constant. There were a few times when I experienced loss of feeling in my limbs or numbing sensations in my fingers. Frustrated beyond belief not being able to hold my infant due to the numbness in my arm for days with no explanation. During one office visit, in particular, I recall being extremely emotional with my doctor who suggested I seek out counseling for my pain. I knew this wasn’t in my head, I was not a hypochondriac, and rarely ever had to go to a doctor previously. I didn’t feel I was being taken seriously. I recall pleading with my general practitioner during this visit to run a full panel of blood work.
A few days later, my doctor called to let me know I had tested positive for mononucleosis.

Over the course of the next 5 years I would continue to see multiple doctors in various states (we often relocated) and was repeatedly sent for X-rays, MRI’s and CAT scans all to return with no findings. The usual ‘fix’ would be a cortisone or vitamin B injection to tie me over. When that would wear off the cycle would repeat and repeat. It was exhausting and frustrating. I felt brushed off and defeated each time. I eventually gave up going to doctors all together because I could never get an answer and was left feeling as though it was all in my head.

How has your life changed since your diagnosis?

Being an unwed mother of 2 young children at the time of my diagnosis was beyond overwhelming. My life had changed dramatically already going through a recent divorce. To have been given the diagnosis and treatments on top of stress I was already carrying I felt completely alone and as if I was drowning most days. No one understood. As I began to learn more about the disease I also had to make drastic lifestyle changes. I no longer had the energy to do all the activities I was once able to do with my children. I could no longer coach their sports or spend all day at a water park. Swimming in the summer took place when the sun went down so I wouldn’t be fatigued by the sun’s rays. I could not attend sporting events if the games were too late in the evening because my fatigue was already difficult to manage during the day, I needed to be sure I was getting at least 8 hours of sleep each night or I wouldn’t be able to get up for work the following day. As a mom, I missed a lot during these years.

I felt like a failure as a parent and that I was constantly letting them down. Everything I did and still do today takes a great deal of planning and preparation. I have to pace myself but most importantly plan ahead to make sure I preserve my energy for the entire day. I used to take so much for granted – having the ability to up and go – but now I have to think every decision through. I used to be a person who had a sharp mind and could juggle multiple tasks but now often struggle remembering small things. I’ve had to really search for and hold on to my sense of humor! You have to laugh and not be consumed with it because it is what it is.

How has your diagnosis affected your family and friends?
Based on the events of how I was finally diagnosed which is detailed below, it took a toll on my family, but mostly my children. I spent a lot of time educating them on the disease in matter of fact terms to calm their fears. Online I found “The Spoon theory” by Christina Miserandino. If you are not familiar with it, look it up. I was able to share this with my children to explain what I felt and to help them understand my limitations. This would become our simple code for years to come and reduced some of the anxieties they would feel if Mommy wasn’t feeling well. They understood as best as young children can, but they were still children and often got frustrated and were disappointed that I couldn’t do things with them. Those people closer to me would say they understand, but they don’t. I often times feel they are misinformed…or not informed at all! I don’t think they know the many aspects of the disease and how it can change so quickly from one minute to the next. If I experience Reynaud’s and my fingers turn blue, people want me to rush to the ER but I know it will pass. I have found that those around me who don’t really educate themselves on the disease are the ones who will stress me out the most when I’m not feeling good. I decided a long time ago that Lupus was not going to be the center of my life, so I choose not to talk about it anymore.

Has a lack of public awareness about lupus affected your quality of life? If so, how?

I feel it has because, personally, people are quick to judge situations and are not always empathetic. For me, sitting in the sun during the summer will set me back 3 days when I am in an active flare. A times during remission, being in the sun has started a flare-up of the disease. I will become extremely fatigued and the pain will start within hours. I don’t develop obvious rashes, but I do get a mild butterfly rash across my face. When I am in an active flare and do need to be outside in the summer, I make sure I am covered and have enough shade to shelter me. I’ve used an umbrella before however was met with weird stares and remarks about the lack of rain so I stopped using it and choose to stay inside. I have developed a sensitivity to sun with my vision, even in the winter or on rainy days, so I don’t go outside without sunglasses. I hear comments all the time or receive strange looks, but for me it’s necessity. Not having my sunglasses on causes me to see spots and I have experienced ocular migraines which have caused me to lose my vision completely for upwards of 30 minutes. It’s just not worth it for me. I know the lack of education plays a part in people’s reactions and I try to let the remarks roll off, but standing out and being viewed as different can also be overwhelming and embarrassing. This is where strength and having humor needs to come into play.

Is your employer supportive of your diagnosis? How or how not?

My employer has been extremely supportive. I have never had a problem adjusting hours due to the many doctor appointments or having to leave early on a bad flare day. I have learned to balance so those days are very limited, but whatever I need, there are no questions asked and no repercussions’.

Please share your story.

I was officially diagnosed with lupus on April 30, 2008 when I became extremely ill with flu like symptoms. I spent the prior 4 days not being able to hold in food or stay awake. The 4th day I had gone into work out of fear of losing my job armed with Gatorade and crackers. I sat at my desk and was experiencing shooting pain in my back. A call to my doctor’s office directed me to go to the nearest emergency room. After an ultrasound it was discovered I had 15% kidney function. I was only 34 years old listening to the Nephrologist on staff explaining to me that if he doesn’t figure out quickly why my kidneys are shutting down, I will be dead by the next day. If that news wasn’t a strong enough blow, it came two hours later when he returned to my room and told me my blood work was showing I was in active lupus. It was a very overwhelming time for me because I took care of myself. I went for my blood work, as suggested, every year to try and catch this. I went to doctor after doctor trying to find answers for years. How did this blind side me? I was always the one who took care of everybody. And in an instant, I felt that was taken away from me. Being recently divorced I was already feeling broken but this news shattered me to the core. I was alone and an unwed mother of two young children. As those thoughts are drowning in my head a sense of calm came over me because I was glad it was me and not one of my children that was sick. I just wanted them healthy and then I became determined to fight because my children would not grow up with me.

The week I was diagnosed was difficult with so much to wrap my head around but most importantly, the hardest part was that it was my little girl’s 7th birthday and she couldn’t celebrate it because she was worried her Mommy was going to die. That tore my heart out. I spent 7 days in the hospital and couldn’t go to her birthday party I had spent months planning, but we did do an impromptu party in the hospital. I will never forget the looks on my children’s faces. I tried to comfort them but at the time I was too weak and sick for them to believe it. The course of the next few years was a struggle because I had to make a lot of changes in my life. Acceptance was not my friend. I truly felt like I was handed a death sentence. I felt miserable all the time and these drugs…seriously? There isn’t a drug that exists that will treat lupus or its symptoms? It was very hard to see the brighter side of things. I felt so isolated, overwhelmed, and alone for a long time. I consumed much of my time reading and learning as much as I could about lupus. My outlook began to change when my brother had gotten in touch with a friend of his from school. When he found out she also suffered from lupus, he put us in contact. This was the beginning of my saving grace. I was finally able to connect with someone and ask questions that I couldn’t find the answers too. Most importantly, I found someone that really understood how I felt. I sensed I was becoming emotionally stronger as I encountered a few more people with lupus and had that opportunity to talk and connect. I was introduced to the Lupus Walk that was being held in downtown Naperville. I decided I needed to participate and find the silver lining of my journey. I began to realize the more I connected and the more I was able to educate people about lupus in a positive light, the more I began to accept the direction my life was now headed. I turned a great corner the day I decided to not be a victim of Lupus and to not allow the disease to define who I was.

I now have amazing doctors in my corner. I trust them completely and know they are always there to answer my questions or calm my concerns when a new symptom arises. I had to learn to slow down, balance the things in my life and prioritize so I no longer feel like I’m missing out on things. My children are some of the strongest people I know and have been supportive as the years have gone on. My Lupus had gone into remission and I was able to maintain it for several years. Flares will come and go but what was important for me to learn was how to balance and manage my stress. Even in remission, it’s important to continue keeping doctor appointments and doing labs. This proved beneficial to me in 2016 when my labs returned showing I had developed Rheumatoid Arthritis. It is not uncommon for the disease to manifest into another secondary auto-immune disease. Emotionally I stumbled once again, feeling defeated and alone, but quickly remembered my strength and desire to not be defined by an auto-immune disease. Today, I lead a very good and active life. I am on a low dose chemo to manage both diseases and continue to see my Rheumatologist every 3 months. I still have my good days and bad days, but through my experience I have learned to accept that it is what it is and I take it all one day at a time. I went from feeling, 9 years ago, that I was handed a death sentence to feeling completely empowered and blessed because I was put on this road to help make a difference and that was the silver lining for me that I was searching for back in 2008 when I felt so shattered.

How did you find the Society of Illinois?

I was told about the lupus walks and found the website.

How has the Lupus Society of Illinois helped you?

Opened the door to an opportunity to make a difference through the walks and connecting me with patients whom I have been able to help and give hope to.

What would you want the world to know about lupus? Why?

Learn more about lupus and how it affects patients differently. Learn how to support a patient with Lupus. Instead of asking “How are you feeling” Say “I would like to make you dinner this evening. What time can I drop it off?” Lupus patients do not like asking for help, but will not turn away an offer for a good meal or housekeeping.

Contact Jen at jen.nay8675309@yahoo.com

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