This is What it’s like to Live with Lupus

After receiving a few diagnoses in my life that I never saw coming, I have had an interest in learning about how others deal with a heavy diagnosis that can turn their life upside down.

I find it interesting when an illness is hard to diagnose and that is especially true when a patient has to go through so many tests as well as misdiagnosis before finding out what is wrong or before receiving any kind of treatment.

One of the illnesses that come to mind when thinking of a heavy diagnosis that will turn your life upside down is Lupus. I have heard about this disease and did a little research, I was also wrongly diagnosed with Lupus by a neurosurgeon who was treating me for Trigeminal Neuralgia.

It turned out that I had complications due to my previously diagnosed Ulcerative Colitis but for a couple of days, I thought I had Lupus. This put the disease on my radar and ever since then, I have been curious about what it is like to live with Lupus.

I feel honored to have the chance to interview Keione Gordon, a military vet, and a licensed medical aesthetician as well as the co-owner of Zenobia Skin who is living with Lupus. I am especially interested to learn more about Keione’s journey because she has clearly not let this illness stop her from living her life to the fullest.

First, I want to thank you for your service, also for taking the time to answer my questions, and for sharing your story with me, as well as my readers. I am excited to learn more about how you have handled this diagnosis, what it’s like living with Lupus, and how you have clearly not let it stop you from living your life.

Could you tell us a little bit about what Lupus is and what kind of symptoms you have experienced?

Lupus is an autoimmune disease that causes the body to basically attack itself. It can affect your tissue, your lungs, your kidneys, your skin. SLE (Systemic Lupus Erythematosus) mostly affects your organs and causes inflammation and other issues. In extreme cases, it can also affect the heart and the brain.

For the symptoms I experienced, the main one was inflammation. I actually gained a lot of weight. I retained water and had a lot of pain in my joints, back, and hips. I also had issues with my blood levels. It was affecting my TSH levels for my thyroid, so more so it was causing me to have fatigue and extreme anxiety as well as nerve issues. I also had the darkened butterfly mask.

What led to your diagnosis? Did you have to go through a series of tests and visits to a variety of doctors to get diagnosed or was it a simple process?

The diagnosis was very difficult. It took a few months and I had to go through a lot of testing. I had MULTIPLE blood tests (repeatedly giving 10-12 tubes of blood at a time) because they had to rule out other autoimmune diseases. Initially, I went to the doctor because of my symptoms and they did a blood test and they identified an autoimmune marker. That told them there was something there so they had to dig deeper. Then they started the process of elimination. I actually have another autoimmune disease (rheumatoid arthritis), so it became that much more difficult to isolate the cause of my symptoms. I had a great rheumatologist who saw my symptoms and could tell that rheumatoid arthritis wasn’t the sole cause.

I started the testing process with my PCP and was then referred to a rheumatologist as well as a neurologist and they narrowed it down.

How has having Lupus impacted your day to day life?

I wish I could say that lupus had not really affected my day-to-day life, but originally, I didn’t leave the house much. I was in a lot of pain and my anxiety was really bad so I spent a lot of time at home in bed. It took a couple of months to wrap my mind around understanding and accepting that this was something that I was going to have to live with. It was very scary knowing the people in my life that have had lupus and seeing them limited in their activities and lives. I was mentally paralyzed by the diagnosis more than physically and I didn’t want to engage in anything that was going to make living with lupus real.

Initially, it also impacted me financially. I was medically discharged from the military, so I was out of work for 2 years trying to get my health under control before I could go back into the workforce. I guess you can say I hit rock bottom. I didn’t drive for a while and I had to almost relearn how to engage in society and live my life.

How have your family and friends handled your diagnosis, do you have a good support system?

Honestly, I don’t wear the lupus “banner” so to speak. I do have a great support system through the Social Butterflies Foundation, which I am a member of. It was founded by Chastity Corbett and that is where I get the majority of my support. I also have a close friend with fibromyalgia, which is similar, so she is a great support. She was the one who told me there was something going on and encouraged me to have it looked into and not to give up until I received answers.

As for my family, I have older children. They have seen me in pain or tired, but I do my best not to allow my illness to impact them. So, I don’t really know how they feel about my illness because it’s not something we talk too much about. We just deal with it, but they are extremely supportive. If I am feeling bad, they will encourage me to rest or slow down. They are very intuitive and wonderful.

Is there anything you can no longer do due to having Lupus?

There’s a lot that I cannot do in the same capacity. I used to love to take road trips, but I don’t do that anymore because sitting for long periods is difficult. I don’t dance like I used to, I’m not as physically active as I used to be. So, it affects my social life.

I still work full time, although it has affected my career. Prior to my diagnosis, I worked for a nuclear medicine provider at a large hospital. That’s not something I am able to do anymore because of the physical constraints. On a regular basis, I would be ok, but unfortunately, I have random bouts with severe anxiety that I cannot control, and there are also times where I cannot grasp a pencil. In that field, I would have to deal with needles and injections and it doesn’t work out well. So, I still work in the medical field, but now I work in aesthetics (as a licensed medical aesthetician) because it is a little more forgiving with the hours and the physical requirements.

Do you take medicine to treat Lupus?

I have been prescribed so many different prescriptions. However, after a year of experimenting with prescription drugs and none fully working (but they had harsh side effects), in 2018 I chose to wean myself off of my medications and research holistic and natural remedies. I started supplementing my prescriptions with the natural remedies I found. The severity of my side effects lessened (hair loss, appetite loss, gastric problems, etc.), and my symptoms have improved. At one point I had 12 prescriptions. Now, I’m down to my vitamins and 1 NSAID if I am having severe inflammation.

Unfortunately, I know that there is no cure for this disease but is there anything you can do to alleviate symptoms?

Even though physical activity is painful, I still try to stay minimally active. I take the stairs, I take a long route walking (no shortcuts),and I watch what I eat. It all helps. I changed my diet; I don’t eat red meat or pork. I try to eat sensible portions and keep myself at a decent weight. I have been on the heavier side and it caused me pain in my joints and mobility issues. I am 5’9” so I try to stay around 150-165 to mitigate my symptoms.

It can be easy to get down about the negative things that have happened in our lives and I know from my own experience that this can be especially true when it comes to our health. Do you have moments where you let living with Lupus get to you? How do you get past the difficult times?

I used to be very depressed and in denial. I didn’t want to admit that it affected me, so I suppressed it. I didn’t go to the doctor or eat like I needed to. I didn’t take my meds. So now I try to be hypervigilant about my symptoms and make sure I make doctor’s appointments if something is off so I can catch it. I also meditate and try to center my thoughts on something other than what I might be feeling. It helps.

Please tell me about Zenobia Skin. Do you find it difficult to own your own business while living with Lupus? Or is it more of a blessing with lots of flexibility for when you need it?  

It is definitely a blessing to be part of Zenobia Skin. It is a release and a way for me to take all of the issues I have had with my skin and have heard from my clients, fellow Lupies, and other women that suffer from autoimmune diseases, and I am able to incorporate that information into the formulations and product lines for Zenobia Skin. I find that it gives me a sense of purpose in a different way because I know what it feels like to not feel beautiful on the outside and how it feels to have things that you can’t control affect what you see as beautiful. If I am able to help the next woman overcome those things, as superficial as it may seem to others, it matters. They affect our self-esteem. The first thing someone sees is your face. If you are having a skin issue or puffiness, that affects how you see yourself. So, to be able to take these things and feelings and try to mitigate them with a product line has been a godsend for me. Not to mention that Zenobia Skin’s products are AMAZING and they WORK and have even helped me to feel more confident about my skin and its condition and appearance. It’s a blessing to be part of this company and makes living with lupus a little easier.

I appreciate the opportunity to be able to discuss my experience living with lupus, especially as a fairly new Lupie (having been diagnosed in 2017). It is a disease that more people need to be aware of because it is an invisible illness that affects a lot of women and men. You don’t know someone has lupus most of the time just by looking at them. So, it’s something that we need to educate people about so there is more information and support out there about invisible diseases. Our neighbors could be suffering in silence, and we don’t even know.

I appreciate the opportunity to discuss my illness and my company.

Thank you for being so open and honest about living with Lupus. Be sure to check out Zenobia Skin for a little self-care, we could all use a little pampering.