Learning You Have Systemic Lupus Erythematosus
My Beginning of Lupus
I had been getting sick more and more often over the past 4-5 years but never really thought anything about it. I should have as I was one to rarely get sick aside from having my yearly bronchitis every fall. I had gone through 3 spinal fusions in a short 3-year time span and thought maybe it just took a toll on my body. Spinal fusions are far from easy and hard to recover from…a lifelong battle with chronic pain that is for certain. Knowing that any surgery is trauma to the body I believe anyone in my position would have thought the same. Both of my lumbar fusions failed and I was still getting weaker and sicker. I ended up getting laid off from work and taking the disability road. I did this because my doctors were talking to me about it for quite some time and said that if I stopped working the wear and tear on my spine would slow down, at the time I was stubborn as I had never not worked. This was long, hard, and very mentally challenging due to the lengthly process to go through for social security approval, especially at my age. I did have 23 years working history but age is still a major factor. I was finally approved after a few years. I was still getting sick and found myself getting fatigued more and more easily, even when trying to keep a light exercise routine weekly and eating right. My activities became less and less but I was not one to allow this to get me down. I had already cut many things from my life that I could not do anymore because of the limitations of my spinal fusion; I still need another one to this day but that is the furthest thing from my mind right now. I have to get my body under control from lupus and that in itself is time consuming and mysterious for doctors to figure out as those with lupus already know.
what is lupus?
I became so fatigued and was having such a hard time sleeping at the same time it was extremely frustrating. I continued to keep having infections in my sinuses, chest, bladder, urinary tract, ears, strep throat, etc. It was late January that I ended up with shingles. This was the beginning of a series of non-stop blood work and multiple doctor appointments. This battery of tests lead to multiple results that were off the high and low ends of normal ranges and a high positive result of ana titer showing a nucleolar pattern that landed me at a rheumatologist and an oncologist for further blood work. It was a toss up between leukemia and lupus and I was finally diagnosed with systemic lupus erythematosus and fibromyalgia.
I remember sitting in the rheumatologist’s office thinking, lupus? and he said “there are no cures, however we can treat the symptoms”. He gave me the rundown on what lupus is/does and started me on plaquenil. I have learned that you can have lupus for years but that illness, trauma, or other stress to the body can make lupus become active within your body. I had heard of lupus before but I had no clue what lupus was exactly. To me lupus was the joke from the tv show House, when he would always tell his crew "its not lupus". So I went home and did much research on the disease and found extremely helpful information at lupus.org and mollysfund.org, I am still learning about this disease everyday, especially living with it and meeting other women online who have had it longer, who have lost loved ones from it, and the fact that no two people present with the same symptoms and are considered snowflakes.
what it does...
Systemic Lupus Erythematosus or SLE or otherwise known as lupus, it is the most common form of lupus as there are other forms. Lupus is an autoimmune disease, to put it simply; the cells that typically attack viruses and bacteria in our body to keep us healthy turn on each other and our body attacks itself, all the healthy tissue, in all your organs. The symptoms of lupus vary between individuals and never go away. It attacks your skin, eyes, hair, mouth/nose, gastrointestinal, liver, kidneys, heart, lungs, brain, memory, sleep, so many things to list. The symptoms can get milder or they can worsen but they never go away. The problem with lupus is that in systemic lupus it can attack any or all vital organs, including the skin. What lupus does to your body is what kills you, not lupus itself. Most people can live a normal lifespan, depending on treatment, but the common cause of death is heart attack, stroke, kidney failure, lung complications. I will speak more of this in other articles to come.
Other forms of lupus include Discoid Lupus, Lupus Timidus, Lupus Profundus, Neonatal Lupus, Drug Induced Lupus.
Some common symptoms of lupus include
- Red rash or color change on the face, often in the shape of a butterfly across the nose and cheeks
- Painful or swollen joints
- Unexplained fever
- Chest pain with deep breathing
- Swollen glands
- Extreme fatigue (feeling tired all the time)
- Unusual hair loss (mainly on the scalp)
- Pale or purple fingers or toes from cold or stress
- Sensitivity to the sun
- HIgh/Low blood count
- Depression, trouble thinking, and/or memory problems.
- Mouth or nasal sores
- Unexplained kidney problems.
When lupus gets more active you go into what they call a “flare”. Lupus flares are extremely exhausting. Flares will cause an array of symptoms all at once. You have to remember that you need to take care of yourself and learn the warning signs of a flare and try to avoid the triggers.
Warning Signs & Triggers of a Lupus Flare
Flares can be mild or severe, they can hot you all at once. Flares are when your body is under attack by the activity of lupus increasing or becoming extremely active. These can be triggered by a multitude of things in life, simple things can trigger a flare. You can learn to know when one is coming. For myself I can feel my body weaken, I start to get higher fevers (102-103) and feel nauseous. Stress is a major cause for flares and can be from something as simple as grocery shopping and being around too many people to situations at home that cause stress. Having lupus itself is a stressful part of everyday life but learning how to live with it can be extremely helpful and keeping a positive attitude will also help you to remain calm. It is important to have support from someone, even someone online to listen to you when you need someone to talk to, even if for a moment.
You have to remember you are never alone. This disease is not easy and most people do not understand and will say things to you that make you feel bad, feel useless, feel like you are lying or trying to gain attention. People don’t realize the impact that lupus has on our bodies, People don’t understand, but we can hope through awareness that they learn about the disease and understand it so that they can be there for us. Until then you have to remain strong, keep your faith, keep your hope in a cure, keep fighting. We cannot give up we are in this together. Find a support group; find a person to talk to, friends become strangers in this but strangers become friends. Having faith and remaining strong in God will get you through the darkest times. He is our anchor in the eye of the storm.
I wanted to write this brief article to start an awareness series for lupus. Doing just the basic information about lupus to start and then going into detail about personal experiences with living with the disease. It is so hard to get "real" information from the internet because they aren't life stories of those who are living with the disease daily. I would like to invite you to follow me or contact me if you have any questions or need someone for support. Lupus is not easy to live with and many do not understand how debilitating it can be. I can be found on instagram through the same username and am in full support of lupus awareness on there as well. I encourage anyone with lupus to share as much as you can with others because the more that know the more chances we have at research to help us find a cure. Take care and God Bless!
Never Give Up
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