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Systemic Lupus Erythematosis, How to Live and Thrive with this Strange Disease, a personal story.

Updated on August 7, 2017
nancynurse profile image

I am a wife, mother, Nana and Christian first. I graduated from UNCC with a BSN in Nursing and a minor in Psychology.

Butterfly Rash of Lupus

My Story

When I was 37 years old I was diagnosed with Systemic Lupus. My first reaction was tremendous fear. As an RN I remember learning about the disease in college and thinking how awful for your own body to turn against itself It seemed like the worse thing that could happen to a person. Lupus is an autoimmune disease , meaning your immune system is in overdrive and it reacts fo your body as the enemy attacking different part of the body, Lupus can damage the joints, kidneys, heart and other major organs. The skin is often the first with a butterfly rash across the nose and cheeks.

I went from fear and confusion to anger. I was exhausted all the time. I had three young children that I loved playing with and caring for. My family needed me and I was working part time as in the labor and delivery department of a major hospital. I was devastated. Several weeks after my diagnosis I developed vasculitis or a form of lupus to the vascular system. My body broke out all over in chicken pox like spots.

I remember waking up in the middle of the night, not being able to sleep. I would sit on our deck in the cool summer night, look up at the stars and pray. I was searching for answers and reassurance that everything would be ok and that my family would not suffer from this illness. It was during those nightly talks with God that I realized I had Him on my side and if I would just rest in His Will for my life He would lead the way. I have to admit laughingly that with the vasculitis rash all over I even felt biblical, like Job.

It took me nearly 2 years to get my life back to some kind of order. Unfortunately I do feel like I missed a couple of years with my children. I was in bed most of the time. We still did things together as a family but I stayed back in hotel rooms or rested in the car. The children were patient and my husband was awesome. One huge problem we faced was his work schedule as he was just beginning a rigorous traveling schedule.

I drove carpool, cooked, did the laundry and then went back to bed. I felt like I was living at the doctor's. My symptoms were very obvious, ANA off the charts, mouth ulcers, blotches on my arms and legs, hair loss, depression, pain, and unrelenting fatigue. I can remember driving with the palms of my hands because it hurt too much to grasp the steering wheel.

My rheumatologist tried so many different things to help me get well. I took prednisone, plaquenil and methotrexate along with many anti -inflammatory drugs. I went to physical therapy for heat wraps, started massage therapy for the pain and saw psychologists for the depression.

After about 18 months on almost constant bed rest except for caring for the children my strength slowing came back but was replaced with chronic pain.

I saw a doctor in Atlanta that convinced me I did not have lupus despite all my positive blood work but just fibromyalgia. Desperate for a cure I took his advice and started on amitriptyline, a drug to help me sleep better . It not only did not help it left me groggy all day and took away my memory of the months I was on the drug . My daughter, a pharmacist, tells me that now they call it a dirty drug and that it is hardly ever used anymore.

Slowly working with my rheumatologist I learned how to keep the pain to a reasonable level and lost the 40lb I had gained while on the prednisone. I was determined with God's help to get my life back. It was an uphill battle but I had my family and my faith to take along.


Signs and symptoms of lupus

Lupus rash on skin. This is the kind of rash I had when I was diagnnosed
Lupus rash on skin. This is the kind of rash I had when I was diagnnosed
Raynaud's disease is a form of sensitivity to cold . Often seen in lupus. Fingers turn blue from lack of blood flow to the tips
Raynaud's disease is a form of sensitivity to cold . Often seen in lupus. Fingers turn blue from lack of blood flow to the tips | Source
Pleurisy and increased risk of heart disease
Pleurisy and increased risk of heart disease | Source

The Disease Itself

Lupus can be tricky to diagnose and once a diagnosis is given it becomes even more difficult to get good health insurance with today's health insurance policies. You become labeled with a pre-existing condition. No matter how well you may feel or how good your blood work looks it is as if there is a tattoo on your forehead for evermore. Hopefully insurance companies will ease up some in the future and look at the person as a whole and not a medical condition.

If you suspect you have any of the lupus symptoms mentioned above your doctor will probably run a series of blood tests including liver and blood enzymes. She is looking for ANA or auto immune antibodies a marker for lupus. Also clotting factors and anemia tests will be performed.

Lupus is treated with prednisone,methotrexate (once only used as a form of chemo therapy) and plaquenil and anti-malarial drug. Often patients are put on strong anti- inflanmmatory drugs, antidepressants, and even iron for anemia and vitamin D for deficiency. B12 injections can sometimes be very helpful for energy. Eating a healthy balanced diet and getting plenty of quality rest, keeping stress to a minimum and staying out of the sun help tremendously in living a healthy life with lupus.

Sometimes patient's with arthritis, fibromyalsia and chronic fatigue may be sent to a pain specialist to help deal with his or her condition.

Life goes on

After a suffering with a severe herniated disk which ultimately needed surgery I feel like my life is more normal. I still am in chronic pain and have days of severe fatigue. I have permanent nerve damage in my right foot which has caused deterioration in my right calf muscle. As long as I wear good shoes inside and out this is really no problem. I do miss high heels. A small price to pay!!!

As with many lupus patients I now have fibromyalsia and suffer from inherited osteoarthritis in my hands and feet. Thankfully my hands only hurt periodically now and mostly on cold or wet, rainy days.

I can't work because of the pain and fatigue and the unpredictability of what my day will be like, but I have my family, my husband and God and that IS enough. I have learned what some people take a lifetime to learn. I appreciate every happy thing in my life. I love sunny days, the smell of fresh coffee, time with my children, the love of my husband and the smile of a good friend. Yes I do miss my old life of lots of energy and working as pediatric and Labor and Delivery nurse. We are struggling to get health insurance. But I have so much to be thankful for. God watches over me and most days I can manage my activities with some foresight and the help of a great family and physicians. I have learned so much about empathy, patience and have grown tremendously in my spiritual faith. I believe strongly that God does know how much we can bear and uses it for the good if we only let Him.

© 2011 Nancy McClintock


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    • GarnetBird profile image

      Gloria Siess 4 months ago from Wrightwood, California

      This is a touching testimony; I am so sorry you went through this horror. One of my best friends had lupus, and as you pointed out, it can steal everything away from ones life.

    • nancynurse profile image

      Nancy McClintock 4 years ago from Southeast USA

      I am so glad I could help you. At first I was devastated but now i realize God does not give us more than we can handle and it has been a growing experience Thank you for writing.

    • profile image

      Julia 4 years ago

      Thank you so much for writing this. I too am a nurse and was diagnosed with lupus about 6 months ago, granted it's in the early stages and I'm only 23 years old, but you've made me realize I need to enjoy the little energy I do have now and continue on with my goals and dreams in life. So thank you again for your inspirational story!

    • nancynurse profile image

      Nancy McClintock 5 years ago from Southeast USA

      Yes He is There is no other way I could make. it. Thank you for your thoughtful words. Love Nancy

    • nancynurse profile image

      Nancy McClintock 6 years ago from Southeast USA

      Thanks so much Marijke . That means a lot to me!!!!

    • profile image

      Marijke Baker 6 years ago

      I'm so glad you wrote this article, Nancy. It helps people understand better what you (and others with lupis) are going through. It amazes me more than ever that you can be so cheerful all the time. God truly is our Comforter and you truly are a testament of His love and grace in your life. - M