‘You didn’t develop ANY antibodies.’ The light at the end of the tunnel shut off.’: Lupus warrior not helped by vaccine, ‘I took for granted how easy it was to live my life’

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“There was never a thought in my mind that I would one day get sick and just never get better… but that is unfortunately what Lupus can look like. Chronic illness changes you, it has taught me to look at life through a different lens. Staying positive is a challenge, but ultimately a necessity. I have always been a go-getter. I joined the military right out of high school and was a medic in the Air National Guard while going to college and earning my Bachelors’s Degree in Nursing. I started my nursing career in the Intensive Care Unit, and loved the challenge of the busy environment and making a difference in people’s lives. I never thought twice about going on an adventure or trying something new, I took for granted how easy it was just to live my life.

woman in national guard nurse uniform
Courtesy of Laurie Acosta

Now, I have to second guess everything. I can’t ride a bike or drive on the highway, no more enjoying a day out in the sun. I’ve been hit with Lupus, Hashimoto’s Disease, and a mild TBI that have rocked my world forever. I continue to hustle and do the best I can. I am a mom, a wife and I also own a small business called The Red Owl. This pandemic has been hard and has shifted the way I live, but having the ability to adapt and remain strong has been a blessing! Here is more about my story and the latest challenge of the Covid Vaccine not working for me:

In 2016, I was an aspiring entrepreneur. My dream to own a boutique had come to fruition and I had just opened a second location of my business, The Red Owl. I became ill with a chest cold and developed rib and chest pain which we thought was just from excessive coughing. It never went away. After months of dealing with the pain, my doctor sent me to a rheumatologist. At first, it was not clear what we were dealing with. As I sat in the rheumatologist’s office and he examined me literally from head to toe, nail beds and all, he looked at me and said, ‘Well, you have something wrong with you, I’m just not quite sure what yet.’ I remember hearing those words from my doctor and the relief of being acknowledged that there was something wrong with me.

Over the next two years, the classic symptoms of Lupus began to show their ugly faces and I would be officially diagnosed. It seemed after getting diagnosed, the flood gates had opened. The next couple of years would be a cascade of new symptoms and figuring out life with this awful disease. Restrictions would be common- no sun, no heat, no stress, the list went on. My body was failing me, and as a young mom, this was the most awful feeling of not being able to live my life freely and do things with my children. Always having to think, plan, be careful, and not knowing how I will wake up that day… would I be able to get out of bed? My condition continued to worsen, and I dealt with Lupus flareups pretty consistently despite treatment with steroids and immunosuppressants.

woman with purple "lupus warrior" starbucks cup
Courtesy of Laurie Acosta

Lupus continues to be the fight of my life. Every day is a battle, the pain can be unreal and the inflammation has even attacked my heart and lungs, I have had pericarditis and pleurisy. Even as I write this, I am getting ready to move on to a more aggressive medication, Cytoxan chemotherapy, which will suppress my immune system even more. This was not the first time I’ve had to fight for my health. In 2012 I was in a great place with a career as a Registered Nurse. I had been an ICU nurse for several years, and was working in-home care as I started my family. Things seemed to be exactly where they needed to be. Then I got up to get a drink of water in the middle of the night, and I had an episode, that we think was a throat spasm, that caused me to pass out.

I didn’t know at that moment that this would be one of the most life-changing moments of my life. The days and weeks after, I struggled with post-concussion syndrome and severe pain in my neck. This would be the first experience in my life where I struggled with disabling symptoms doctors couldn’t explain. I was told nothing was wrong with me, and sent home to rest.  The next few months would be multiple unexplained symptoms such as uncontrollable tremors, dizziness, and severe neck pain. As the weeks went on and weekly visits to the emergency room became exhausting, I finally landed in the hands of a neurosurgeon. The immediate answer was to have a cervical spinal cord fusion surgery because I had injured my neck in the fall.

woman on the beach
Courtesy of Laurie Acosta

After healing from surgery, the neck pain disappeared, but it became apparent things still weren’t back to normal for me. My head injury symptoms took center stage and I was struggling to do daily tasks such as cleaning my house, walking in a supermarket, and driving.  I soon found it impossible to continue my life’s work as an RN taking care of patients, so I stopped working. By what I consider a miracle, I was introduced to a neuro-optometrist who finally diagnosed me with post-traumatic vision disorder and mid-line shift syndrome. My vision was very much affected by my concussion. I was fitted for prism lenses and saw a very drastic reduction in my acute symptoms. However, it is still a battle I live with every day and in the back of my head always wonder if this injury was the trigger for the onset of my Lupus.

Living with these disabilities hasn’t been easy, but I have learned how to adjust. I listen to my body and do what I can. I am lucky to have the support of my family and be able to run my own business. I remember coming to the realization that I might need a plan B for my career. I explored options with my husband, Nelson, and talked about my dream of opening a jewelry and gift store after we visited a shop while away. I remember him looking in my eyes and telling me ‘Laurie, if that’s what you want to do, let’s do it. We will make it happen.’ He has been my rock and support since the beginning and never once has made me feel like I can’t do something.

wedding photo of couple on the beach
Courtesy of Laurie Acosta

Fast forward to now – the pandemic has added an additional layer of challenges I was not prepared for as a mom and business owner. Lately, my days are filled with uncertainty. The world is moving on with the pandemic as many people are vaccinated and mask mandates are lifted, but for the immunosuppressed population this poses the greatest challenge of our lives… to risk or not to risk it?  You see, I became vaccinated as soon as I could. I remember driving to the clinic and crying tears of joy that I could soon feel the relief of having some protection against getting severe Covid if I were to get it. I take multiple immunosuppressants to control very active Lupus disease, including infusions. In particular, one of the infusions I was on has been associated with severe Covid symptoms.

In the back of my head I knew if I were to contract Covid, I’d have a very good chance of requiring a ventilator, and who knows what else. I was scared for my life, so the thought of getting vaccinated was a no-brainer for me. I joined a study through John Hopkins University that would test me for antibodies after the vaccination. This study looks at people who take immunosuppressants and vaccine response. In addition to the thought of helping others by participating, I knew I would get confirmation of protection. However, the day I got my lab results turned into a day of sadness as I learned I did not develop any antibodies from the vaccines.

woman with infusion in her arm
Courtesy of Laurie Acosta

I cried in my car by myself as I thought about where that leaves me. The light at the end of the tunnel has been shut off for me, and the approximately 3-5% of the population who is like me. What do we do now? We are told to continue as if not vaccinated, but what category does that put us in? You see, we are not the same as people who choose to not vaccinate. We carry much higher risk factors and are now dealing with difficult decisions on how to move forward. As a small business owner, I have not been able to fully work in my business since the pandemic started and this now gets even more challenging as I still have to avoid the general public. Restrictions are being eased away, but I can’t just ease away my restrictions… I find it hard to trust that people who are not wearing masks are all vaccinated.

The immunosuppressed population is really not being addressed or considered as decisions are being made to move forward. We are all tired of living life this way, but I can’t just shut off my risk factors and concerns. In Connecticut, people with underlying conditions were not prioritized for vaccination, so already that gave me the baseline understanding I would need to be my own advocate in this battle. Dealing with being immunosuppressed and high risk for severe Covid is met with a lack of understanding by many, including family and friends. I’ve been told many questionable things when I have voiced my concerns to people like ‘well you could get hit by a bus walking out of your house’ or ‘can you try taking vitamins for extra protection?’ The fears that loom in my mind are hard for others to understand and I don’t blame them, but it’s exhausting explaining my situation over and over again.

family portrait
Courtesy of Laurie Acosta

My husband and children also suffer because of me, as they have to be more careful to protect me. Not everyone is as eager to get vaccinated and although we are told to trust the general public that if their mask is off to assume they are vaccinated, I just can’t do it. Strangers don’t care if I live or die, I get that. Vaccination is a choice, I get that. I wish people would just consider that maybe getting vaccinated can go beyond themselves. I’ve accepted I must move forward, but am really unsure what this looks like for my family and me, there is no sense of normalcy yet for us, and in the land of chronic illness, this is what we ultimately strive for.”

This story was submitted to Love What Matters by Laurie Acosta from Connecticut. You can follow her journey on FacebookInstagram, and her website. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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