Facing The Lupus Giant: My Lupus Diagnosis
Life Before Chronic Illness
There are several narratives that describe my life, but never thought that chronic illness would be one of the stories that would play out in mine. Sometimes I think back to my life before illness, and long for those days when I could run 3 miles without struggling to breathe, back to the days of my martial arts training, back to the days when I could run around and play with my children without having to pause constantly to take a breath.
This story will document a little of my life after lupus. Some images may be disturbing. I have made myself very vulnerable in this particular segment, and I appreciate your comments at the end.
Thank you for allowing me to share my story with you.
Leading up to my Lupus diagosis
After battling with what seemed like endless illnesses, as you can see from the list below, I was finally diagnosed with lupus, and was told that lupus was the culprit all along.
Diagnosed with asthma around 2000
Diagnosed with heart condition chronic atrial fibrillation late 2006
Diagnosed with COPD and mild Emphysema circa 2008
Diagnosed with pernicious anemia January 2012
Diagnosed with neuropathy February 2012
Recommended for lupus screening by the neurologist based on all my other diagnoses
- Diagnosed with lupus March 2012
- Diagnosed with depression in May 2012
Since my lupus diagnosis,
- I have undergone many iron infusions due to severe anemia.
- I was also diagnosed with a degenerative spine...arthritis.
- I have also been diagnosed with costochondritis...arthritis in the rib cage.
The Diagnosis: "You have lupus!"
After the diagnosis
Obviously the journey to my lupus diagnosis took several years, as is the norm for many lupus patients. Lupus often mimics other illnesses, so getting the final diagnosis can sometimes take years. Getting this diagnosis of lupus was almost a relief for me. I finally had something to blame for everything that had been happening….but what the heck was lupus. I had no idea of an illness called lupus until my neurologist mentioned it, and then I spent days researching and educating myself on what it was, only to discover there were several kinds. Deep inside I was praying it was just the discoid lupus which affects the skin only…most of the time. However, I knew, based on all my other diagnoses that it would have been systemic lupus.
Once the confirmation came a few weeks later after the second testing, upon the insistence of my primary care doctor, the next question was, “What’s next?”
So I Have Lupus! What's Next?
Based on everything I had read and researched, I had one major question: “Can I die from this?” considering that there have been advances in medical care….never mind the fact that there was only ONE, yes ONE, medicine designed for lupus in 100 years.
I was told that lupus is very unpredictable. I knew that based on research. I was told that the symptoms could range from mild to life-threatening at times. I knew that, also, especially since lupus had already attacked my heart, lungs, peripheral nervous system, stomach. I was told it was a chronic illness. I was told about flares, and about periods of remission that could occur.
AND THEN THERE WAS THE DREADED STATEMENT: THERE IS NO CURE FOR LUPUS! “YOU WILL HAVE LUPUS FOR THE REST OF YOUR LIFE!” I guess that’s what chronic illness means.
However, I was not going to accept the statements that it was "INCURABLE" nor that I was "GOING TO HAVE IT FOR THE REST OF MY LIFE."
What Is Lupus, You Ask?
What Is Lupus?
Lupus, n a nutshell, is an autoimmune disease. It happens when the immune system attacks its own tissues, causing inflammation, swelling, pain, and damage. The immune system mistakes the body's own tissues as foreign invaders and attacks them.
Lupus symptoms include fatigue, joint pain, fever, and a lupus rash.
Some people with lupus suffer only minor inconvenience, while others suffer significant lifelong disability.
Lupus affects people of African, Asian, or Native American descent two to three times as often as it affects whites. Nine out of 10 people with lupus are women. The disease usually strikes between age 15 and 44, although it can occur in older individuals.
Different types of Lupus
Types OF LUPUS
Discoid lupus is characterized by a rash that appears on the face, neck, or scalp. The rash is typically red and scaly, and may cause discomfort and hair loss around irritated areas. When it appears on the face, it is sometimes called a “butterfly rash” because it resembles the wings of a butterfly. Some patients may have the rash for only a few days at a time, while others may suffer rashes that last for months or even years. This type of the disease also causes mouth and nose ulcers, as well as sensitivity to sunlight. In some cases, it may progress to systematic illness.
The best-known type of the condition is systemic lupus. While the illness can cause the rashes common in the discoid variety, it may also affect the skin, blood, nervous system, kidneys, heart, joints, and lungs. Some individuals with the disease have only one or two organs or tissues affected, while others may have many affected organs, systems, or tissues.
Drug-induced lupus is a rare type of the disease caused by the long-term use of certain drugs. Symptoms are similar to those found in discoid and systematic form. Many drugs are linked to this type of the disease, including medications for tuberculosis, high blood pressure, schizophrenia, and Crohn's disease. Only a very small number of people taking these drugs develop this condition and the symptoms generally disappear upon discontinuing the medication.
Neonatal lupus is another rare form of the illness. The condition occurs when women with systematic lupus transfer some of their auto-antibodies to their infant during the birth process. In many cases, this condition is temporary and the symptoms subside within a few months. Rarely, the illness leads to heart defects, skin problems or decreased liver function.
Stiff face and tight skin
I have Systemic Lupus!
Yes, I was diagnosed with Systemic Lupus or SLE, as it is called. It has affected my heart, lungs, peripheral nervous system, stomach. It also affects my skin, f I am not careful of how much sun exposure I get. I get kidney function and liver function tests done regularly, as I have mild involvement in those organs. When I was first diagnosed I experienced the butterfly-shaped rash across the bridge of the nose and cheeks. At times it felt like alligator skin.
Aside from the visible effects of systemic lupus, I also experience joint pain in the rib cage called costochondritis, as well as joint pain throughout the rest of the body. Bran involvement is rare, but for some, like myself, lupus can cause confusion, depression, seizures and in more severe cases, even strokes. I have mild seizures relating to the neuropathy, and I also experience severe tinnitus and hearing loss due to lupus-related neuropathy.
During very cold weather I experience what is referred to as Raynaud's syndrome, where the blood vessels in the skin contract, preventing blood from getting to the hands and feet. Most attacks last only a few minutes, can be painful, and often turn the hands and feet white or a bluish color. I have learned to keep my hands warm by wearing gloves.
No Cure For Lupus!
While there is no cure for the disease, symptoms and flares sometimes respond to treatment. Medications, such as non-steroidal anti-inflammatory drugs (NSAIDs) may be used to treat fevers, joint pain, and discomfort. In some cases, immune-suppressing medications help slow the production of auto-antibodies, thus relieving symptoms. Corticosteroids are also sometimes prescribed to reduce inflammation in the body. Since many immune-suppressants and steroids have serious side effects, they are usually taken on a short-term basis only.
Lifestyles changes are sometimes recommended for those suffering with the disease. Eating a non-inflammatory diet, getting plenty of rest, and avoiding sunlight exposure may help reduce symptoms. Since lupus can be a frustrating and difficult condition to manage, some people benefit from joining support groups or attending therapy. Talking to other people with the disease, or expressing concerns to a supportive doctor or therapist may help reduce the stress and negative emotions associated with a chronic condition.
Lupus and Hair Loss
Loss of toenails
Lupus and Oral Concerns
Lupus and Hair Loss
Lupus causes widespread inflammation that usually involves your skin — particularly on your face and scalp. Lupus can cause the hair on your scalp to gradually thin out, although a few people lose clumps of hair. Loss of eyebrow, eyelash, beard and body hair also is possible. I found this out the hard way. My eyelashes started to fall out to the point where wearing mascara made no difference. My eye brows thinned out, but my wonderful daughter showed me make-up tricks to make them look thicker and real....that was important.
I developed round (discoid) lesions on the scalp. These discoid lesions can scar your hair follicles, and can cause permanent hair loss. However, I found out natural ways of treating and reversing the hair loss. I will discuss that in an upcoming Blog, Facing the Giant: My Herbal Journal to Healing.
Lupus and Peripheral Neuropathy
Had it not been for my neurologist, I would probably still be guessing what's wrong with me. After a slew of neurologic tests, he suggested that I get tested after seeing the results. He could not understand how someone in my physical fitness state could possibly have that kind of nerve damage.
I had been suffering with tingling in my hands and feet, then a range of burning sensations, until my doctor finally, at my urging, sent me to see the neurologist.
Symptoms of peripheral neuropathy from lupus can range from mild to serious and mainly affect the hands, feet, legs or arms. They include:
* burning sensation
* inability to sense heat or cold
* vision problems
* carpal tunnel syndrome
After trying me on B12 supplements and shots that did not work, I was finally sent for lupus testing to determine if in fact that was the culprit.
The Traditional Treatment Plan
Plaquenil in addition to all the other medications that I was on for heart, lungs, neuropathy, pernicious anemia.
WHAT IS PLAQUENIL? Plaquenil is used to treat the symptoms of rheumatoid arthritis, such as swelling, inflammation, stiffness, and joint pain. It is also prescribed for lupus erythematosus, a chronic connective tissue inflammatory disorder.Immunosupprresant drugs.
I was beginning to question my existence, question God. Why did I end up with this dreaded illness? I had taken excellent care of my body..martial arts, cross country throughout college, and now it seems that my body was rebelling against me….literally attacking me.
I told my doc that I should have had that shot of tequila and smoked that joint when I had the chance.
I felt like he had just given me a death sentence, but I had no intention of dying from this.
An Arsenal Of Pharmaceuticals
My diagnosis occurred on a Tuesday. I immediately started the new treatment. 4 days later, Saturday morning, I woke up feeling very ill. I had already been thinking of more natural remedies to treat this disease. It could be any worse than this archaic remedy, plaquenil. I was nauseous. I was weak. I felt like an alien had taken over my body and was fighting to regain control of it. Mrs. Mango PUT PICTURE HERE.
I remembered driving by what looked like a broken down old shack several times, where, inside held a treasure trove of natural herbal healing remedies. I decided to take the short 3 mile drive with my daughter and youngest son, who were keen on finding out what this place was all about.
While inside I spoke to the Master Herbalist Anneke, told her my symptoms and diagnosis, developed a more natural treatment protocol, and paid for my merchandise, knowing that I was going to be a regular customer here. Throughout this discussion I felt really ill, and was going in and out of the store thinking that I was going to hurl.
After a few minutes, I came to staring up at many faces looking down at me. I was told that I had collapsed and was to be rushed to the hospital. I was told by my daughter, who witmessed it, that it was the most graceful collapse ever. In a nutshell, I fell into a door face-first. Then I fell back, twisted and fell face-first into a table, bounced upwards, before finally falling onto the floor.
When I got to the ER I was questioned about the medication that I took repeatedly and asked if was sure that I should have taken those. After telling the attending ER doctor that I was told to take them together, he informed me that they contributed to my near cardiac arrest state that I was brought in with. I visited my primary care physician a couple of days later and a quick change was made. I also informed him that I would be taking a more natural path from now on. He was not happy, but said, “Let’s see.” I did not quit all pharmaceuticals at once, but I did add some herbal remedies with the pharmaceuticals, under the watchful eye of my herbalist.
Lupus and Heart Issues
Lupus and Heart Issues
How does lupus affect the heart and circulation?
There are many ways in which lupus can affect the heart. It can cause pericarditis, myocarditis, coronary artery disease In my case it puts me into constant atrial fibrillation. I have severe tachycardia as a result. My highest recorded heart beat per minute was 248 BPM. My doctor said he was very surprised that I had not gone into cardiac arrest.
How does lupus affect the Circulatory System?
Inflammation in the circulatory system can cause the following symptoms.
- Feeling ill
- Poor appetite
- Weight loss
- Blurry vision
- Behavioral disturbances
Many days I ran a low grade fever, had regular headaches. I had started to gain weight from the Cymbalta and other medication I had been taking. I had blurry vision from the effects of the plaquenil, and had even started to hallucinate. As a result I went to see a psychiatrist, who told me I was fine. The images that I had been seeing were ANGELS so he was not in the least bit concerned about my hallucinations. He was concerned about the side-effects of the plaquenil, however.
Look out for part 2 of Facing The Giant: My Herbal Journey To Healing
One of the things that allowed me to progress past my diagnosis was to view myself as someone with a chronic illness, not someone who was chronically ill. The change in attitude, outlook on life kept me from losing my identity as a person.
Lupus was just a small part of my life!
I continue to face the lupus giant daily.
My journey continues to beat this illness.
In my next segment of FACING THE GIANT you will learn of my herbal path so watch out for part two called Facing the Giant: My Herbal Journey to Healing
John Lennon's Tribute to friend who died from lupus, "Lucy In The Sky"
What is Lupus?
If you've just been diagnosed, this book will be helpful!
© 2015 Gina Welds Hulse