Come to see the butterflies, and leave with lupus awareness

Come to see the butterflies…

A significant number of people who visit my blog find it through search engines like Google, Bing, and Yahoo.  Since this blog is primarily about lupus, one might think that everyone who finds it is looking for information about lupus.  While that is true for many visitors, a good number also follow links here because they are looking for images of butterflies (maybe because they like butterflies as much as I do!)

No matter why people might find this blog, I am glad that everyone can leave with greater lupus awareness.  This is a place where both butterflies and lupus awareness can be found in abundance.  If you want to know more about the connection between lupus and butterflies, check out my April 24, 2012 post, “Lupus and it’s mascot: butterfly or wolf?“.  This quickly took the “LAward” for the most highly read post on this blog, well into tens of thousands of reads!

And leave with…

So, if you are one of those who found me because you were seeking butterfly images, welcome!  I trust you will take a moment to learn a little more about lupus, perhaps by stopping for a few minutes to read a post or two.  You will find at least one butterfly picture in every blog post.

If you want to find out more about lupus, please read the “Lupus Medical Information” page of this blog.  It will take you to a page with basic information about lupus and links to more detailed authoritative information.  I suggest at very least visiting the Lupus Foundation of America at www.lupus.org.

If you just want to see the pretty butterflies and don’t feel like reading about lupus, no problem!  Please just click on the “Butterfly Collecting Adventures” button or browse through posts to see the butterflies on each, and enjoy.

My hope is that maybe you will do both — enjoy the butterflies and learn more about lupus!

If all you really want is a postage stamp summary of lupus, and no more, here are a few quick points:

• Lupus is a systemic connective tissue disease in the same family of auto-immune illnesses with rheumatoid arthritis affecting skin, organs and other tissues and body systems.
• Many lupus patients have skin rashes, arthritis, fatigue, mental clouding, mouth/nose ulcers, a butterfly shaped rash on their cheeks and are positive for antibodies against their own body cells such as ANA (antinuclear antibodies).
• Lupus can attack the kidneys, and is a leading cause of kidney failure.  50% of lupus patients have some level of kidney involvement.
• Lupus is difficult to diagnose, because it affects so many systems of the body, and can easily be confused with other diseases.
• Lupus affects each person differently, and can change suddenly and unpredictably in the same patient, going in and out of flares and remission.
• Although lupus is potentially fatal, if found early enough and treated properly Lupus can be well-controlled.
• Most patients can live a normal life span with little or no organ damage with standard treatments.
• Lupus is an important women’s health issue – it discriminates unfairly against women and minorities.  90% of lupus patients are women.
• Lupus is more prevalent in women of color: Hispanic, black, Asian, and American Indian women, with the highest mortality rate in elderly black women.

Lupus awareness…

Lupus awareness is very important, especially for those people who don’t yet know they have lupus.  For example, many people know enough about diabetes to recognize possible symptoms in another person, and would urge someone with diabetes symptoms to seek medical advice.  So, also, knowing enough about lupus to recognize its common signs and symptoms in a friend or family member could make a great difference, or possibly even save her life.

Lupus awareness is very important.  Although there is no cure yet, there are new and exciting medications, treatments and ongoing research that can help prevent lupus from destroying the health of those who have it.  Because one out of every 150 people has lupus, it is very likely that someone you know has lupus.

Thank you so much for stopping by, even if it was just to see the butterflies.  If you learned a little about lupus, even better!

Thank you for visiting
Lupus, the Adventure Between the Lines!

The Beatles and two childhood friends with Lupus

The girl next door had lupus

The girl next door had Lupus.  We didn’t know it at first, but one day a few years after my husband and I were married, we were visiting my folks in California and my mother told me about Julie’s illness.  Later that week, we walked over to the house next door to see Julie while she stopped in to see her mom.  Julie and I sat down with our mothers in their kitchen and shared a cup of coffee and a long catch-up chat. Julie showed us the discolored rashes on her face, and told us about some of the troubles she had with lupus.

The somber mood of that conversation about lupus haunted me.  Lupus had become the great tragedy of Julie’s young life!  It was not too much later that I was also diagnosed with lupus.

front yards where we played together

trying to beat each other at jacks

When Julie and I were both children, we never worried about things like getting lupus.  We spent our time playing with dolls on each others front porch steps, playing hop scotch, shooting marbles and trying to beat each other at jacks.  Sometimes we would get all the kids together and start singing songs with our hair brushes as microphones, pretending to be the music stars we wanted to emulate.

Once in awhile, older girl who lived across the street would round up all the neighborhood kids, including her 11 younger brothers, and coax us all to act out the play scripts she had written.  Our neighborhood playwright’s front porch also happened to be the best “stage” on the street.

Julie had a sister one year older than me, my sister was two years older, and Julie was one year behind me.  Our ages made us all perfect playmates, except for the brief periods of family kid feuds that would spawn from time to time out of our corporate immaturity.  There were 9 kids between both of our large families, and on summer days, we would all set out on foot to the public swimming pool at the high school.  It was there Julie and her older sister taught me and my older sister how to swim.

both diagnosed with lupus

I had lupus arthritis symptoms as a child, pleurisy, mouth ulcers, and rashes, but never noticed if Julie also showed signs of it earlier in her life.

The stars we emulated in our front porch “concerts” were our favorite 60′s bands the Beatles, the Beach Boys and the Monkeys, and our favorite female singer Nancy Sinatra.  We each took turns performing our loud unaccompanied renditions of songs like “I Wanna Hold Your Hand” and “These Boots are Made for Walking” on our front porch “stages,” while all the other kids sat on the grass as our audiences.  If you were not around during the 1960s, these musical details will probably mean nothing to you.  But, I can even remember watching the famous “Ed Sullivan” TV show in the early 60′s when the Beatles had just come to America from England, when their performance was broadcast on live black and white TV.

I recently viewed this Lupus Foundation of America lupus awareness video by Julian Lennon, the son of singer and song writer John Lennon of the Beatles.  Julian tells about his young childhood friend, Lucy, that died from lupus in 2009.  Lucy was the inspiration for the Beatle’s hit song “Lucy in the Sky with Diamonds.”  Julian Lennon is a Global Ambassador for the Lupus Foundation of America and benefactor of the St. Thomas Lupus Foundation in the UK.

In Julian Lennon’s video, he tells about his connection to lupus and his friend who had lupus, Lucy Vodden.

Living with Lupus: Fact #21 – Nervous system involvement

Living with Lupus:  More than 80 percent of people with systemic lupus will experience some type of nervous system complication. Nervous system issues in lupus range from mild confusion or memory loss to strokes, seizures, and vision problems.

Lupus brain fog

Lupus brain fog

Most lupus patients experience a general mental clouding that is often dubbed “brain fog” like that experienced by other people auto-immune illnesses like fibromyalgia and multiple sclerosis.  This is not necessarily due to Central Nervous System lupus, but is more a byproduct of the metabolic processes related to cellular apoptosis, or cell death.

In non-medical terms, the best that I understand this process is that a normal amount of cell death happens all the time, and then our body makes new cells all the time to replace the ones that grow old and die.  The dead cells are made up of molecules, proteins, genetic material and other biologic building blocks that become the body’s trash to throw out when a the cells die.  In other words, the pieces of broken dead cells become garbage in our body, or what is called “cellular debris.”

As our body works hard all night to sweep up the aftermath of cell death that happens while we sleep, the higher than normal rate of cell death in lupus creates a huge load on our body’s sanitation system, and the garbage gets piled up in our body.  One of the places that is noticeably affected by too much cellular debris is the brain, and it clogs up the normal processes and makes it harder to think clearly.  As a result, many people with lupus experience mental clouding, or “brain fog,” especially in the morning when other lupus symptoms such as arthritis are also most pronounced.

Morning fog lifts as the day goes on…

During a visit a few years ago to Anchorage, Alaska to attend a LFA conference about lupus, I had an opportunity to visit with Robin Brey, M.D., a neurologist who worked at the University of Texas Health Science Center in San Antonio and was president of the LFA, South Central Texas Chapter and chat with her about nervous system involvement of lupus.  Doctor Brey was quoted in a 2005 Lupus Now issue, explaining that “cognitive dysfunction definitely is the most common symptom of CNS involvement that she sees.”

“The way I relate to the term ‘cognitive dysfunction’ is that it’s a problem of difficulty finding words and retrieving information,” Brey explains. “My patients say it feels like they have brain fog.”

CNS lupus involvement

CNS involvement

In addition to the milder brain fog, some lupus patients also have Central Nervous System (CNS) involvement of their lupus.  This is a more serious problem than brain fog, and if uncontrolled can result in damage to brain tissue and even in extreme cases death.  This, like any other attack organ damaging attack of lupus is important to treat quickly and appropriately to prevent possible damage to brain tissue or other disabling complications.

CNS symptoms

My own lupus challenges include CNS involvement.  CNS lupus is the major reason that my lupus medications eventually included stronger drugs such as prednisone, kenalog injections, methotrexate, azathiaprine, rituximab infusions and now belimumab infusions.  Each patient with this problem is carefully followed by their rheumatologist, and may also be treated for their CNS symptoms through referral to a neurologist.  The most severe cases of CNS involvement can also cause seizures, but I have never had this problem myself.

My CNS lupus symptoms usually indicating a flare include:

• mental confusion
• short-term memory problems
• cognitive dysfunction and disruption
• difficulty concentrating and solving problems
• general sense of confusion, lack of direction
• disorientation to space and getting lost trying to find familiar places
• forgetting names of people I know very well
• confusion about time, day, date and even month
• problems with math calculation
• difficulty with eye-hand coordination, vision and depth perception
• slurred speech and difficulty articulating words while speaking
• headaches
• reversible depression

Most of my CNS lupus symptoms typically immediately responds to steroid treatments given by my doctor, either as an injection or a large burst in my daily prednisone dose, followed by a gradual tapering of the dose as the flare lets up.

Authoritative information about CNS lupus and other types of nervous system involvement of Lupus is found at the Lupus Foundation of America’s website.  Their article on the Nervous System  discusses various types of nervous system involvement, and highlights many important issues and symptoms associated with these possible complications of lupus.

Nerve cell

Peripheral and autonomic nervous system and lupus

Peripheral neuropathy with lupus can be caused by inflammation, compression, damage or swelling in tissue around nerves, resulting in vision problems, facial pain, ringing ears, dizziness, drooping eyelids, or carpel tunnel syndrome.  My lupus experiences include peripheral neuropathies in my legs, cranial nerves and even once neuropathy was diagnosed as the cause of severe pain in a tooth that almost made me get an unnecessary root canal.  Thanks to an astute endodontist who knew about lupus, he accurately diagnosed my problem and we treated my lupus, instead of pulling a tooth!  Neuropathy can cause burning, pain, numbness and temporary disruption of normal nerve functions.

Neuropathy nerve damage

Lupus can cause over activity in the autonomic nervous system (ANS,) disrupt normal regulation of automatic body functions and cause numbness, burning, tingling, mental confusion, headaches, and digestive problems.

Raynaud’s phenomenon happens when ANS lupus involvement causes inflammation in nerves or blood vessels, making vessels spasm and restricting blood flow, especially in repsonse to cold. Finger tips or toes turn red, white, or blue and may also hurt.

Headaches in lupus patients can be due to migraines, or can be caused by vasculitis from active lupus causing blood vessel inflammation. Lupus headaches that don’t respond to over-the-counter pain medications should be discussed with the patient’s doctor.

Diagnosis and Treatment of Lupus: Lupus Fact #8 – Rheumatologists and specialists treat lupus

Diagnosis and Treatment of Lupus:  Lupus is primarily treated by a rheumatologist, a physician who specializes in conditions affecting the joints and muscles.  Most lupus patients see several different doctors over a several years before they finally get an accurate lupus diagnosis.  My family doctor who finally suspected an autoimmune cause to my health problems, referred me to a rheumatologist who specialized in treatment of autoimmune diseases such as rheumatoid arthritis, gout, and lupus.

Other types of doctors that treat lupus

Some people with lupus may need extra care from specialists when persistent symptoms or organ threatening lupus complications may require the involvement of specialists who are highly knowledgeable in treating specific organs and body systems, such as:

Many specialists treat lupus

Dermatologists – cutaneous lupus, discoid lupus rashes, sun sensitivity, and some more serious lupus skin conditions

Nephrologists – various stages of kidney disease, kidney dialysis management and post-transplant care

Cardiologists – pericarditis, endocarditis, lupus valve damage, congestive heart problems secondary to lupus and extended steroid treatments

Opthamologists – annual eye exams for patients taking Plaquenil medication, treatment of cataracts from extended steroid use

Neurologists – central nervous system (CNS) lupus, neuropathy, peripheral neuropathy, seizures

Gastroenterologists – lupus liver involvement, elevated liver enzymes, lupus digestive system inflammation and other symptoms

Dentists and Otolaryncologists – sjogren’s syndrome, oral and nasal ulcers

Orthopedic Surgeons, Chiropractors and Physical Therapists – rehabilitation and surgery in damaged joints and weakened connective tissues and ruptured tendons

Rheumatologists treat lupus

Since nearly any system of the body can potentially be affected by lupus, or by medications used to treat lupus, nearly any type of medical specialist might become part of a lupus patient’s treatment team.  Usually, rheumatologists are the primary physician involved in oversight and management of a lupus patient’s overall treatment and medications.  My rheumatologist and family practice doctor work closely together to coördinate the treatment of my lupus, asthma, sleep apnea and degenerative disk disease.

Diagnosis and Treatment of Lupus Fact #7 – No single test for Lupus!

Diagnosis and Treatment of Lupus:  There is no single laboratory test that can decide whether a person has lupus. Diagnosing lupus involves analyzing the results of several lab tests, a review of the person’s entire medical history, and the history of close family members.  When I was finally diagnosed with Lupus, I had demonstrated 7 of the 11 diagnostic criteria, a positive blood test for ANA and rheumatoid arthritis was ruled out as a cause of my symptoms.

Common blood tests to look for Lupus

• Anti-nuclear antibody test (ANA) looking for autoantibodies in the blood that attack the nucleus of cells
• Anti-DNA antibody test to look for antibodies that go after cell’s genetic parts
• Anti-Sm antibody test to look for Sm (ribonucleoprotein inside cell nucleus) antibodies
• Blood complement find out how many of a certain type of proteins are used up during immune reactions
• Tests for amounts and types of C3 and C4 complement proteins

“See Lupus Foundation of America website for more detailed information about lab tests used to diagnose lupus.

Diagnostic Tests

Doctors use many sources of information to decide if a person may have lupus.  They look at their medical history, lab tests and current symptoms, reviewed against 11 Lupus diagnostic criteria. If a patient has at least 4 of the 11 criteria, the diagnosis might be lupus, but some of the criteria are more important that others in making the diagnosis.  7 criteria are symptoms, and 4 are found using lab tests.

The ANA lab test helps doctors diagnose lupus, because 95 % of patients with systemic lupus have a positive ANA. Having symptoms of systemic lupus with a negative ANA usually makes the doctor look for another cause for their symptoms than lupus.  Even a positive ANA all by itself is not enough to diagnose lupus.  Other autoimmune conditions and diseases can also have positive ANA tests, such as:

Rheumatoid arthritis
Sjogren’s (show-grens) syndrome
Scleroderma (sklare-a-derm-a)
Infectious diseases such as:
Mononucleosis
Malaria
Subacute bacterial endocarditis (SBE)
Autoimmune diseases including:
Autoimmune thyroid disease
Autoimmune liver disease

The 11 Diagnostic Criteria for Lupus

The Lupus Foundation of America website shares the following information about the diagnostic criteria used to look for lupus:

“To help the doctors diagnose lupus, a list of 11 common criteria, or measures, was developed by the American College of Rheumatology (ACR). ACR is a professional association of rheumatologists. These are the doctors who specialize in treating diseases of the joints and muscles, like lupus. If you have at least four of the criteria on the list, either at the present time or at some time in the past, there is a strong chance that you have lupus.

1. Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
2. Discoid rash – a rash that appears as red, raised, disk-shaped patches
3. Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
4. Oral ulcers – sores appearing in the mouth
5. Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed
6. Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis)
7. Kidney disorder – persistent protein or cellular casts in the urine
8. Neurological disorder – seizures or psychosis
9. Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
10. Immunologic disorder – abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies
11. Abnormal antinuclear antibody (ANA)

People with lupus also may experience symptoms that do not appear among the ACR criteria:

• fever (over 100° F)
• extreme fatigue
• hair loss
• fingers turning white and/or blue when cold (Raynaud’s phenomenon)”

Diagnosis and Treatment Lupus Fact #6 – A diagnosis often takes years

Diagnosis and Treatment: Many symptoms of lupus mimic those of other illnesses, and symptoms can come and go over time, which makes diagnosis more difficult. Because lupus can attack nearly any system of the body at any given time, lupus can seem to be a number of unconnected health problems within the same patient.

lupus discoid rashes

Lupus rashes are easily be dismissed by doctors diagnosing them as eczema or allergic skin reactions and rashes.  Before my lupus diagnosis, over the years my discoid lupus rashes were diagnosed as a  “sun allergy”, eczema, strawberry allergies, and infected rashes.  Lupus joint pain, stiffness and inflammation are easily misdiagnosed as osteo arthritis, tendonitis or suspected to be rheumatoid arthritis.  The brain fog of lupus, and its more severe lupus involvement in the central nervous system is at times misdiagnosed as multiple sclerosis, or even depression.  My lupus oral and nasal ulcers were misdiagnosed for years as infections, and even suspected and biopsied to see if they were cancerous lesions.

Hard to diagnose

These changing presentation of lupus symptoms can take years before  a doctor finally puts the different pieces together and sees the connection between the various symptoms and lupus.  Consequently, lupus can often take three to five years or more to diagnose, and as many doctors.  It is important the a patient who suspects they may have lupus to continue to persist in seeking medical care and a diagnosis.

Lupus and the first rolling shopping adventure

Christmas in April?

Christmas shopping is a funny topic in April, but as I was thinking about firsts with lupus, I realized that my first rolling shopping mall trip was one of my most memorable lupus firsts.  Many years ago, when Christmas was approaching, I had to face the fact that shopping and the mall had been my absolute last priority, as I struggled through an intense long-lasting arthritis flare of my lupus.  Walking was extremely difficult because of swollen and painful feet, knees and ankles, along with overwhelming bone-tired fatigue.  Because my husband had never done the Christmas shopping alone without me, he devised a plan to accommodate my severely narrowed physical abilities and endurance.

Arriving at the mall, we approached the customer service kiosk as my husband informed me he wasn’t going to let me wear myself out shopping.  Dismissing my protests, he spoke with the mall staff and checked out a wheel chair.  Pointing to the seat, he said, “let’s go for a ride.”  It felt uncomfortable at first sitting and depending on him to push me around.  I struggled with the strangeness of my new mall perspective.  Sitting at a lower eye level than standing, it was reminiscent of walking beside my mother with my hand in hers, and not being allowed to walk around at will.

View from the wheelchair

There was an uncomfortable feeling of frustrating helplessness.  I had to tell my husband each time I wanted him to take me closer to something, and when he was looking at something, he would push me just past it, with my back to what he was looking at.  It took awhile before we communicated well about how the wheel chair was changing my shopping experience.  I didn’t like that we were not walking hand-in-hand as before, but rather he was behind me and often didn’t hear what I said.  I was along for the ride, and I certainly didn’t feel like I was in charge!  I didn’t really like it.

However, shopping from a rolling perspective was also a great relief because of the extreme fatigue and pain my lupus caused, in or out of the wheelchair.  As we gathered many purchases, I soon had a full lap and was competing with the gifts for space in my wheel chair.  By the end of the trip, I was exhausted, and greatly appreciating the wisdom and leadership my husband had demonstrated when he insisted on carrying out his plan to keep my strength.  I realized in retrospect that I would have been absolutely unable to endure the shopping trip that we had enjoyed that day together, spanning many hours and every corner of the mall.  I had to acknowledge how much my lupus was disabling me.

Others helped me get around

This was not the last of my rolling shopping excursions.  After that, most of my other shopping trips in malls, departments stores and grocery stores were from a wheel chair for a while.  For the next three years or so, my lupus continued its exhausting, crippling flare, despite the cancer and transplant chemotherapy drugs I was taking to control it.  My lupus even progressed to where one Christmas I didn’t go to the mall at all, and all my shopping took place from my home office desk chair.  That year all our gifts were ordered over the Internet and delivered to our house.

It was a full four years before I eventually ventured briefly into a shopping mall again on foot, and almost a full ten years before I was able to stroll through a mall from one end to the other on foot.  Even now, I have to carefully consider my footwear and stamina when planning to go to a shopping mall.  Often, I strategically plan to visit one shop, parking near by it to cut my walking distances.  After treatments several years ago with infusions of the biologic drug Rituxan, my lupus never returned to its earlier severity.  Although it has been many years since I had to do my Christmas shopping from the seat of a wheelchair, I will still never forget the adventure of my first rolling shopping trip!

Lupus and a letter to my younger self

Lupus at sweet 16, but not diagnosed

Lupus at sweet sixteen, but not yet diagnosed.  You don’t know this yet, but in a few years you will be a young wife and mother, and will finally be diagnosed with lupus.  However, you will continue to have mysterious symptoms for another ten years before a doctor finally asks the right questions, and runs the correct blood tests to find the answer to why you are so sick.

In the meantime, please just keep trusting God on the days you feel bad. It is not in your head, you are not a hypochondriac, and some day you will have an answer and proper treatment. Until then, keep focusing on your blessings and hold onto the joy of the Lord in the midst of your rough times. The signs of lupus have already been present for most of your life, but the family doctor you have seen since you were five doesn’t know what to look for.  He has repeatedly tested you for rheumatoid arthritis and diabetes, knowing that your mom’s mother had both, in his attempts to try to find an answer to explain why you have had so many health problems.

Even when you had kidney problems and protein in your urine, he never figured out your recurring childhood “kidney infections” were really lupus. Someday you will understand and need to forgive him for what he doesn’t know.

5 year old feet

Remember when you were five, and your knees and joints became swollen and stiff for weeks, and they tested you over and over for rheumatoid arthritis?  It hurt so much to get up and down out of a chair that you cried, and cried?  They were trying to find lupus, but didn’t know what to do to find it. Not very long after that, you went through months of falling asleep in exhaustion in the middle of the afternoon, and the doctor put you on the diabetes diet, thinking it was blood sugar problems, even though you tested negative for diabetes.  They just didn’t yet suspect lupus!

Then, there was that summer when you were a couple of years older, you started getting round puffy red rashes the size of pennies on your face, arms and neck.  This was a sign of your lupus, too,  but the doctor only could describe it as a sun allergy.  He didn’t know to look for lupus.  Later on, you got more round red rashes on your forearms, and your mother thought they were ringworm.  Then you had deep red swollen patches of rash a couple of years after that all over your neck.  Still, probably more cutaneous lupus discoid rashes.

Later, remember another time when you were unusually exhausted for months, and your mom explained to you that the doctor had done blood tests that revealed you were extremely anemic?  Then, you took sustained release iron tablets for several years before your hemoglobin levels stabilized.  This might have been caused by lupus attacking your blood cells, but we will never know, because they didn’t test for lupus.

Summer after grade school

Later, in the summer after grade school, there were high fevers that made you hallucinate.  The doctors at the hospital never suspected lupus, even after searching in vain for a virus or bacteria they thought was causing the fevers.  Still, no lupus diagnosis.  Afterward, you felt bone-tired fatigue for weeks, and in your school pictures from 7th grade you had deep dark circles under your normally sparkling eyes.  Remember how you hid those awful pictures, because they made you feel like you looked like an old sick woman?

Then, a couple of years ago in middle school, they had another opportunity to find your lupus, but missed that, too.  Your sudden severe case of painful pleurisy in your lungs in the eighth grade should have been a clue for your doctor to suspect lupus.

All the migraines you have had since you were a little girl, and the painful mouth and nose ulcers you have had every few weeks from the time you were five or younger were signs and symptoms of lupus. I hate to tell you that you will have to continue having those oral and nasal ulcers for the rest of your life, every time your lupus gets ready to flare. They will become your early warning sign of another major flare ahead.

In a few years, a doctor will even try testing your recurring nose ulcers for cancer, but will again overlook having the biopsy tested for lupus.  I am so sorry to tell you that it will take a few more years and a couple more doctors before one finally figures out that the ulcers are a sign and symptom of your lupus that will eventually be diagnosed correctly.  It is going to take about ten more years.

Senior year of high school

In a couple of years, during your senior year of high school, you will be very sick from October until March. Your legs will ache, your vocal chords will tighten up and you will have fevers and lung infections. You will miss most of your school classes that fall and winter, and have a six-month long bout with what you doctor will dub a “pneumonic viral syndrome.”  During those months you take scores of antibiotics and other drugs, but continue to get sicker and sicker.  You will have no memory of Thanksgiving or Christmas from that year, and the rest of the time will be a foggy blur in your memory.  During those months you will first experience symptoms of peripheral neuropathy pain and nerve irritation in your legs, and you will lose your voice to laryngitis for several months.  The inability to sing will sadden your young heart and be one of your few lingering memories from that long season of illness.

During your second year of college you will experience a long lupus flare that attacks your central nervous system, and have difficulty for the first time remembering what you study. Midway through the school year, you will experience days of intense confusion and sometimes get lost on campus looking for your classes, and even forget your best friends’ names.  Your forgetfulness will have some rough impacts on several friendships, and neither you nor your friends or family will understand why. This will be a lonely scary time, but when you call out to God to be your anchor, He will remain faithful and give you courage and strength to tough it out.

Don’t be afraid of the uncertain years ahead, for in due time you will be one of the lucky ones.  In your fourth year of college you will meet and marry a wonderful man who suffers from asthma and epilepsy, and because he faces his own health challenges, compassionately understands you are facing an as yet unidentified health foe.  You will both share a deep love of God and music, and two solo singers will blend their lives into an amazing duet.  Before you marry, you talk about understanding when each other have the “gray days” when you feel off par, and know you will be able to encourage each other through them.

Young mother in car accident

Shortly after your two children are born, an answer will soon be in sight.  You will have some spinal injuries in a major car accident when you fly into the windshield, head first, and then go through three years of physical therapy.  In the aftermath of that injury, you body will have a hard time recovering.  Arthritis, tendon and muscle inflammation will become out of control, and eventually, you will have intense pain and immobility.  Some days, your knees will be too painful and weak to climb the stairs to your apartment, and your husband will carry you up the stairs.

Difficult to shop

Then, for days at a time, your hands, legs and feet will have so much swelling and intense pain that you end up sobbing by the end of shopping for groceries.  As the pain gets worse, you are eventually walking like an old woman, hobbling in stiffness and pain with every step.  You and your doctor will not at first understand why all this is happening, along with recurring bouts of round skin rashes, more pleurisy, sinus infections and other cycling issues that will come along the way.  Finally, your doctor will look at you one day and say, “you are too young for this,” and you will in wholehearted agreement exclaim, “I AM too young for this!”  In a moment of insight and inspiration, your doctor orders some blood tests that you have never had done before.

A doctor will finally understand it is lupus

A few days later, in excitement and near glee he will call you in to his office to talk!  You will hear the words, “if I am right, you will be doing hand springs in a few months.”  He won’t tell you what he found, but will send you to a rheumatologist he highly respects.  There will be many, many more tests and eventually you will begin receiving medications to treat you for lupus.

From that point on, your life will not be all smooth sailing, but you will always after that know that you are battling lupus.  Your doctors will make many choices along the way that maximize your health and keep you functioning.  You will be able to avoid disability and work a long successful career in law and government, and have a wonderful and fulfilling life.  You will live to see many decades of marriage, grandchildren and much more beyond.

A part of your journey but not in control!

Lupus will cause you many challenges in the years ahead of you, but it will not defeat you.  Your life will be at times a lupus adventure.  You will become strong and will be a victor, and lupus will just be a part of your life’s journey, unwelcome, but not in control.  Your faith and joy will not fail, you will rejoice in the blessings of life.

Lupus and an inspiring image

Beginning a new life

Every day is a new beginning.  No matter what yesterday holds, be it pain, illness, sorrow, bankruptcy or other difficulty or challenges, each new day is a new adventure and fresh opportunity.  Each dawn is a new beginning.  Each tomorrow promises us a fresh start at beginning the rest of our life.  With lupus, we never know how we will feel the next day, and it is not uncommon for that new morning to be the worst part of our day.

We have an opportunity every time we wake up to make a change in the things we can control in our lives, or not.  The choice is up to us.  Most of us know the things, that if we do them with consistency, they will make a difference in our health.  Some of these options that impact our health each day include healthful eating, exercise, rest, compliance with physicians orders, taking our medications as prescribed, and living a healthy lifestyle.  While one choice on any single day may not make much difference, taken all together, days on end, week after week, month after month, they matter.

Fluid trainer in the corner of our home office

Today is a new day, and so today is my day to resume my exercise routine in earnest.  After spending weeks during March sick with asthmatic bronchitis, I am now mostly back to breathing properly.  The massive doses of steroids have helped me gain at least 5 pounds, all sitting in the middle of my tummy.  My weariness and illness made me make some poor meal choices, and I have eaten way too many fast food meals in recent weeks.  It is time to make a change, a new beginning.

I believe in miracles.

So, back to the bicycle on the fluid trainer in the corner of my office.  Back to my normal routine of morning yoga and stretching.  Back to skim milk and sugar-free Torani chocolate and raspberry syrup in my coffee (instead of sugar-sweetened flavored creamer.)  Back to packing my fruits and veggies, with lean meat & cheese roll ups (minus the bread and mayo of my recent sandwiches.)  Back to unsweetened tea in the afternoon instead of a candy bar and cola from the vending machines at work.  Back to more home-cooked healthy meals for me and my family.

Back to basics, back to smart things, and time to get on with doing the things again that make me healthy.  Each right choice builds a small step toward the miracle of feeling better. The real challenge is finding the strength and discipline to make the change.  But, as the hymn writer sings, “I’ve seen the lily push its way up through the stubborn sod, I believe in miracles, and I believe in God.”

Lupus, Benlysta infusions and almost glorious mornings

Lupus, unwelcome travel companion

Lupus has been an unwelcome companion in my health journey for many, many years now.  Over time, my innate enthusiasm for greeting each morning was gradually eroded, and even more so as my lupus marched seemingly ever on in its escalating attack against connective tissues.  However, after many cycles of ups and downs, an irrefutable truth has been demonstrated:  future good days can always be expected to follow present bad days.  This thought involves faith and feeds sanity.

new chapter

Over the past weeks, I have slowly acknowledged turning to a new chapter in the telling of my lupus story.  Malaise, miserable nights and foggy-brained mornings have quietly tiptoed out of my daily and nightly experiences.  There were no fireworks announcing the change, and no dramatic hoopla.  Instead, lupus arthritis pain and joint swelling, mouth ulcers, dry eyes/mouth, fatigue and other symptoms have been slowly reducing by almost imperceptible increments.   Like the quiet hush after a raging storm, it has subtly dawned on me that in the stillness of absent symptoms –  I am no longer standing in the midst of a torrential lupus storm!  Occasionally, I have turned backward and briefly re-read the earlier parts of the adventure, but soon find myself continuing to read on in the newest calmer pages.

Morning after morning I have awakened feeling more alert and comfortable, almost forgetting to notice the absence of customary discomforts in the calm.  Night after night pain medication to silence burning peripheral leg neuropathy sits unused, as these symptoms’ frequency and intensity have lessened.  Dreams replaced insomnia in the wee hours of the night, previously haunted with discomfort and malaise.   Now, each dawn holds a new sense of rested refreshment, and once constant morning lupus headaches and deep brain ache and mental fog are now just mild echos that gently lift away without great effort.

new normal

In contrast to the perennial flare that connected hundreds of days of pain, stiffness and mentally clouded mornings, I am now quite comfortable and perhaps even cheerfully awakening.  The quietness of my lupus symptoms emerges as a possible “new normal” experience!  Most recent mornings find me ready to face the day ahead, while pausing to acknowledge and thank God for this long-awaited lupus improvement.

After eight infusions, I believe the Benlysta may actually be starting to significantly control my lupus symptoms!  Yippee!  I must admit this realization sneaked up on me quietly.  I am so thankful to live in a time and place where medical  research has finally yielded new drugs for treating lupus.  We, who have access to western medical care, have multitude blessings to be thankful for!