Chronic Illness Spotlight is a series in which different illnesses are highlighted and a Chronic Illness Warrior that lives with the illness is featured. In the last article, we highlighted Atypical Bilateral Trigeminal Neuralgia. Today’s post will spotlight a Chronic Illness called Systemic Lupus.
What is Systemic Lupus?
Also known as Systemic Lupus Erythematosus or SLE, is a chronic illness that causes systemic inflammation throughout the body.
According the American College of Rheumatology, “In addition to affecting the skin and joints, it can affect other organs in the body such as the kidneys, the tissue lining the lungs (pleura), heart (pericardium), and brain.”
Symptoms of Systemic Lupus may include:
- Fatigue (feeling tired often)
- Painful or swollen joints
- Swelling in the hands, feet, or around the eyes
- Low-grade fevers
- Sensitivity to sunlight or fluorescent light
- Chest pain when breathing deeply
- People with lupus may also have problems with the skin and hair, including:
- A butterfly-shaped rash on the cheeks and nose
- Hair loss
- Sores in the mouth or nose
- Lupus may also cause problems with the blood and blood vessels, like:
- Blood clots
- Low numbers of red blood cells (anemia)
- Fingers and toes turning white or blue and feeling numb when a person is cold or stressed (Raynaud’s phenomenon)
More information can also be found at the Lupus Foundation of America.
Amber was a Registered Nurse until her health made it impossible to work.
According to her blog, she started blogging because, “I can provide a different look at living with a chronic illness as I can bring my education and work experience to the table, along with my own personal experience. My overall goal is to spread awareness and happiness while living with a chronic illness!”
Thank you for sharing your story with us!
What other Illnesses have you been diagnosed with?
Fibromyalgia, IBS, Endometriosis, Interstitial Cystitis (IC), Migraines and Hemiplegic Migraines, Adrenal Insufficiency, Anxiety, Depression and Bertolotti’s Syndrome
Briefly explain your illnesses.
Most of my chronic illnesses cause chronic pain. I have immense amount of joint pain from Systemic Lupus and muscle pain due to Fibromyalgia. Intermittent abdominal pain due to IBS, endo and IC and back and hip pain from Bertolotti’s Syndrome.
The fatigue from all my illness is immense and there are days we can’t get out of bed. Due to the lupus and the treatment I take, my immune system is suppressed so I pick up pretty much every germ that walks by me.
The migraines are present about 15ish days a month. With some causing weakness and numbness on one side of the body and slurred speech.
How has your illnesses impacted your life?
Due to all of my illnesses, I am no longer able to continue working. And I am now on permanent disability. I am an RN and I practiced for over 10 years.
When the migraines got bad and my lupus became worse, I could no longer function at a capacity needed to work. Once I had to leave my job, I no longer had income so I had to move out of my apartment and move in with my family. So my life is much different than I ever wanted or expected.
How long did it take to get diagnosed?
I got acutely sick with a horrible respiratory infection that put me in the hospital for a week at the beginning of February 2012. During the stay no one was ever able to figure out exactly why I was so sick. Over the coming months, I continued to be sick and my pulmonologist finally decided in early May to redo some labs and run some new tests. When she did my ANA was VERY positive so I was sent to see a rheumatologist, who was hesitant to diagnose me with anything. It took a few more months to finally get the diagnosis of Systemic Lupus and Fibromyalgia.
Looking back, we can see that my first flare was in 2001 when I had mononucleosis. That illness lasted for six months. We are pretty positive this was my first big Fibromyalgia and Lupus flare.
I was diagnosed with Endometriosis and Interstitial cystitis in 2011 after dealing with severe stomach pains that went undiagnosed from 1998.
Why do you think it took that long to get a diagnosis?
I feel that it took as long as it did to get a diagnosis for Systemic Lupus because it takes time for antibodies to show positive. Also symptoms of Systemic Lupus can be the same as so many other conditions. There are a ton of conditions that can cause pain and fatigue.
As for the length of time it took to diagnose my Endometriosis, because I could not convince anyone that the pain I was experiencing was much more than IBS pain.
How is your life different now compared to a few years ago?
My life couldn’t be more different than it was before I got diagnosed. Around the time of diagnosis, I was working full time on a Cardiothoracic step down unit as a charge nurse. I was in the first semester of a masters program, And had gotten a position as a Adjunct Nursing Instructor at a local nursing school.
Once I got sick I had to drop out of my masters program and resign from the teaching position due to my illness. I was a typical 26 year old. Going out on the weekends and living life. I am no longer able to work, I have had to move in with my family at the age of 31. And I don’t get out much because many of my local friends have given up on me because I often have to cancel plans.
What do you do on you bad days to make them better?
Take a good hot bath with Epsom salts, use my heating pad or heated or weighted blanket. I also sometimes will chat with people in the Lupus support group I started 6 years ago on Facebook. I also vent to some of my Lupus friends. If I’m more down and feeling bad I will veg out on Netflix or read a book while I lay in bed or on the couch. And I take lots of naps.
How do you handle the isolation you may experience because of your chronic illness?
I do feel like I am often isolated especially during the winter/cold and flu season. It’s hard to deal with. But I do my best to spend time talking with friends via text or Marco Polo and staying in touch. Using Marco Polo helps me to feel less isolated because I can actually see the person I am talking to.
I also try to go out to public places occasionally with friends. We try to go places at times when they won’t be busy so I don’t have to deal with crowds. When I do go out I always wear a mask, which took me awhile to get used to. It’s hard to deal with all the stares and whispers when you walk in somewhere wearing a mask. Honestly, dealing with isolation is hard but it comes with the disease.
What advice would you give someone that is trying to get diagnosed or is has a new diagnosis?
I will share two of the best tips I have been give over the years.
The first is to act as your own advocate. This means to fight for what you want or feel like you need. No one else will ever advocate for you like you can. You are the only one who truly know how you feel and what you want from the doctors. So don’t be afraid to tell the Doctor your wants and needs. You are paying him to help you not to be ignored or blown off.
My second tip is to find a good support group where you really feel comfortable. Find a place where you can really open up and discuss how you are feeling without judgement. A support group is also a great place to make friends who are dealing with similar things. Finding your “person” who is also chronically ill gives you someone you can talk openly with about how you are feeling without worrying about any judgements.
I want to thank Amber for sharing her story with us. I have quickly become a big fan of her blog, The World Sees Normal! Her desire to share her life and educate others about living with Chronic Illness is a passion we both share. Please take a moment to check out her blog and social media.
Where you can Find Amber!
Blog: The World Sees Normal
Read more Chronic Illness Spotlight Articles
- Chronic Illness Spotlight: Familial Mediterranean Fever
- Chronic Illness Spotlight: Rare Bone Disease & More
- Chronic Illness Spotlight: Ehlers Danlos Syndrome
- Chronic Illness Spotlight: Myalgic Encephalomyelitis & Fibromyalgia
- Chronic Illness Spotlight: Atypical Bilateral Trigeminal Neuralgia