Lupus fatigue midst the hope that springs eternal

Hope midst lupus flare

Hope springs eternal, and so it must be for me with my lupus.  Over the past few weeks, I struggled daily with overwhelming fatigue and bone-tired exhaustion from a long, low-grade lupus flare.  Discoid lupus rashes have popped up on my scalp, fingers and expanded in size and aggravation where they already were stubbornly persisting.  Mouth and nose ulcers, and lupus rashes in some very unusual places, such as the opening of my ears have emerged anew.

My job has suffered, while many days  I was only able to work half-days and was struggling to fulfill work responsibilities.  It has been a challenge to feel hopeful in the midst of such weariness.

Hope is still there

However, hope is still there, deep down, flowing inside me through a place far below the surface of the flare, ever-present and encouraging.  Hope.

Hope that tomorrow will be better, that increased steroids and today’s Benlysta infusion will shut down my flare, and that I will do better in my work again soon.  I must persist in my hope that I will be able to better meet the needs of my family again, that I will feel like cleaning house, maybe even as soon as tomorrow.  I have abiding faith and hope that God will enable me to get my eyes off of myself again to look outward instead of focusing inward so much, as I unfortunately have been doing of late.

I am convinced that hope and faith do not look down, backward or inward, but rather upward, forward, and outward.

Hope looks upward, forward, outward

Hope depends upon faith.  Faith in someone or something bigger, stronger, wiser, more powerful than myself.  There is no question now that this someone on which to direct my faith is not me.  Hope comes from faith, and the ability to relinquish and invest my trust into that one I have faith in.  My ultimate source of all hope is  the Lord, for He alone is greater than my finite mind can comprehend — in his vast wisdom, love, mercy, power, strength and so much more.

I can trust Him, and I can trust that these things that He permits (not causes) to come into my life because of lupus, such as this month’s weariness, will not always be the way they are today.

Infusion and hope

So, I hope.  I sit here at the infusion center with Benlysta flowing into my veins, and hope.

My flare will ebb, my rashes will be relieved, my strength will return, my medications will work, and I will be better tomorrow than I am today.  I will choose to have faith, to trust, to have hope and look up, not down.  From deep within me where God himself has graciously touched my heart, I know joy welling up and arising through my weariness.

The joy of the Lord is my strength, and my joy will be greater than the flare and weariness of today.  Today I choose joy, not because of how I feel or because of fair weather, but because of the One in whom I trust for tomorrow.

Choose hope. Tomorrow the sun shines!

All day a fierce late winter storm blew through Arizona.  I traveled down the freeway to the hospital in a driving afternoon rain, with windshield wipers slapping back and forth in a sloppy rhythm.  The downpour drenched my clothes in the mere 30 steps from my car to the hospital front doors.  The nurse greeted me with a warm welcoming hug, but I gave a decidedly damp one in return.

Although it rains, and my joints hurt and I am tired, I still have hope and believe.  Tomorrow, the sun shines!

Today, in my lupus flare, weariness and pain, I choose to rejoice.  I choose hope.  I choose joy.

Lupus and confessions of a coffee mug hugger

Screaming alarm…

The alarm on my tablet PC laying on the end table summoned me from the half dead depths of sleep. The flashing screen announced, “9:20 Dr. Appt.” My waking realization was that in exactly one hour I needed to be there! So, striking the graphic snooze button to silence the screaming electronic gadget, I set the tablet back down on the night stand. For just a moment, my groggy lupus-tinged brain begged me to lay back down and wait for the 30 minute warning.

I have been late too many times in my life because of sleeping in, or because my lupus was too active in the morning to allow me to safely leave my house earlier. Today was not going to be one of them. Forcing myself out if bed, I stumbled down the hall to assess the morning state of my kitchen. Alas, no waiting coffee on the burner this morning. My husband must have left in too much of a hurry to make it.

Coffee, quickly!

Coffee, quickly, was the first order of business! No time was left to brew a pot, so some microwave zapped water and instant coffee on the go would have to do. Morning medications with a dash of juice and a quick piece of toast and Nutella.  Next sprinting through a mini-shower, and stepping into jeans, t-shirt and flip-flops were all a continuous motion sequence of events ending with a key sliding into the ignition of my PT Cruiser.

In motion, still…

In motion, still, I traveled down the freeway on a ten-minute jaunt to the doctor’s office. Still groggy and barely legal as the CNS morning lupus symptoms clung to my still fuzzy brain.  I realized I was actually hugging my thermal coffee cup!  In between sips of the stimulating drink, my cup was not in the cup holder between sips, it was gripped by my right hand, as I hugged the warm cup against my heart.

teddy bear in years long, long before

So, this is the confession of a coffee mug hugging lupus patient, in that dawning realization I was actually clinging to my coffee cup as I once might have to my little teddy bear in years long, long before grand-motherhood, motherhood, college, grade school and kindergarten. I had caught myself embracing a warm thermal mug, enjoying a few moments of miniscule fleeting comfort. How could I help but quietly chuckle at myself in the silliness and simplicity of the pleasure.

Off to the McDonald’s

Barely on-time and slightly more awake, my destination was in front of me. I enjoyed the remainder of a great cup of coffee as it accompanied me through the waiting room, time with the doctor, and chat with staff before leaving. The last sip went down as I returned to my car and headed off to the McDonald’s across the street to get a refill, write down this snap shot of my thoughts, and chuckle one more time at my now humorous expression of endearment to a mere coffee cup.

Cup and refill in hand

Now, my brain has shaken off enough of the clinging brain fog to safely embark on the rest of my day’s journey. Cup and refill in hand, I will try to regain some shred of maturity, and refrain from any more mug hugging this morning, at least not in public.

Lupus and forgetting the unforgettable

Friday telecommute

Last week, there were no doctor appointments or Benlysta infusions scheduled for Friday, the day each week I telecommute and schedule in most of my appointments with doctors, lab work and other meetings. One of my best friends asked me to come over for lunch, since she was off work for the day.  This was the second time we had tried to get together in a couple of weeks, since the week before I had been sick all Memorial Day weekend, and forgot all about our plans to meet on Tuesday.  She of course, anticipated I would not remember after being sick for three days.

forbearance of sister friend

So, my dear friend overlooked my forgetfulness, because she well-understands the effects lupus has when it goes after my central nervous system in a flare. She is always so gracious when our friendship and plans take a back seat to the changing state of my health. That is why she remains one of the few very special people who have risen to the status of sister in my personal circle of friends.

ok & looking 4wrd 2 it… see u then

So, when Friday morning came, I woke up with a groggy brain and a grateful heart that there were no places I had to go that day. There was no thought on my mind except that for once, I had no appointments on my schedule.  The lack of appointments had been the original logic behind the plan to meet my friend at her house during my telecommuting day lunch break. She only lives about five minutes from my house, so it was really a workable plan. On Thursday, she texted my cell phone to check if we were still on, asking if I was I feeling okay?  My reply, typed with two thumbs on my cell phone at a stop light, “ok & looking 4wrd 2 it… see u then.”

fixed myself a sandwich

Well, as Friday morning progressed, I pulled out my laptop, logged on to my work computer network via the Internet and nifty VPN connection. Lunchtime came, and I went out to the kitchen and fixed myself a sandwich, and went back to work. It never entered my mind, until late the next day that I was supposed to call my friend and go to her house for my lunch hour on Friday.

On Saturday, I had a vague sense I might have forgotten something I was going to do, but couldn’t remember what it was. Was I going to practice music with a friend after finishing my work? Was that the day my other friend was planning to meet me? Was my other friend in town this weekend and we were going to have a piano lesson?  None of these had made it on to my digital calendar, so I gave up trying to remember what I had missed.

Did you forget about lunch?

On Sunday morning at church, my friend approached me with a hug, as she said, ” did you forget about our lunch on Friday?” I was suddenly seized with the realization I had stood up a best friend, again, twice in two weeks! With profuse personal anguish and painful honesty, all I could offer in explanation was that I had simply completely forgotten about her on Friday. “Well, when.11:00 a.m. came and went,” she explained, “I eventually figured that out.”

This was a difficult, awkward moment! Not meaning to, I had disappointed my dear friend and hurt her feelings. Of course, she tried to understand, but still, the lack of being important enough to me for me to remember our plans, for a second time, had to have some sting to it.  Not many friendships could weather this type of challenge, but this one has seemed to endure many of these memory lapses.  I thank God for a handful of friends and family like this!

Arrrgh!

This, the unpredictable loss of important short-term memories, priorities and plans, is one of the most challenging adventures I must face due to lupus, and its frustrating impacts from attack on my central nervous system.  If I could only always remember not to forget, I would!  In the eloquent words of the Charles Shultz cartoon character, Snoopy the dog, “Arrrgh!.”

Prognosis and Hope: Fact #27 – Lupus is not contagious but is often invisible or misunderstood

Prognosis and Hope: Lupus is not contagious and cannot be “given” to another person. Lupus is unlike and unrelated to HIV/AIDS or any other infectious disease. Once people realize this, they may want more information or to correct misconceptions about it.

Lupus is an invisible autoimmune disease

Lupus is an autoimmune disease that is mostly invisible. Rashes and visible joint inflammation are understood easily because others can see them, but are the least severe of lupus symptoms. When the rash clears or the swelling subsides, lupus may still be active and causing organ damage or discomfort, without visible signs. Others often don’t understand this hidden aspect of lupus.

When I need to talk about my lupus

Sometimes when I need to talk about my lupus with people at work, with family or friends, lupus is misunderstood. Some people have mistakenly assumed it will be fatal or life-shortening. Although uncontrolled lupus can damage vital organs such as kidneys, liver and heart, with proper treatment, most lupus patients can live a normal life span. I try to help others understand this.

A miracle cure?

Then, there are those who insist lupus is curable, and they tell me about a supplement or amazing natural remedy that I need to try. I’ve been told many anecdotal reports of cousins, friends and neighbors who “got over” their lupus because they were smart enough to take the secret cure the doctors don’t want me to know about… the magic supplement. I try being polite, and realize they just want me to feel better.

Some in denial about my lupus

And, there are the people who do not believe that I have lupus. I have been frustrated, and even tempted to anger when someone clearly denies I have lupus because they have decided I don’t have their permission or approval to be sick. I am not completely sure what to do with this self-centered attitude toward my lupus, but it is hard to deal with! It is certain these people remove themselves from my support network, probably unintentionally. I don’t waste my time trying to convince them.

Someone you know has lupus, ask them about it.

For most people, knowing there is no cure makes them sincerely concerned. I appreciate the conversations where I am able to raise others’ lupus awareness, and perhaps help them understand it better. I believe everyone should know enough about lupus to be able to recognize possible signs and symptoms, and to encourage someone who may have lupus to get medical care. I do my part in spreading lupus awareness to those I know, because someone they know has lupus.

Living with Lupus: Fact #22 – Not so beautiful butterfly rash!

Living with Lupus: The malar, or “butterfly” rash on the face is present in about one-third of those with systemic lupus. This flat, reddish rash across the bridge of the nose and cheeks, is often the only visible symptom of this form of lupus.  Before I was treated for lupus, a malar rash showed up on my face many times.  As a teenager, my mother was intrigued by the deep purple splotches I had over my cheekbones.

Faces of malar rash

Malar rash is one of the eleven diagnostic criteria for lupus.  After my treatment with Plaquenil, the standard medication for all lupus patients, most of the vivid pigmentation of malar rash quieted down.  Now, malar rash shows up after getting too much sun, or during a flare. To prevent over exposure to sun, I wear a large hat and just try to stay out the heat of the day.

Is it malar rash or rosacea?

The Lupus Foundation of America (LFA) provides this important discussion about malar rash, and compares it to rosacea:

“The butterfly blush or rash is a faint or prominent red rash over the malar area and the bridge of the nose. The rash does not go into the sides of the nostrils or down the fold between the nose and the outer part of the lips. These areas are always spared and look white in contrast to the red rash of the cheeks and bridge of the nose. Sometimes the rash is flat, and sometimes it is elevated. It may be in the form of red blotches or may be completely red over the area. The rash may be itchy, especially if it looks more like a rash than a blush. This rash is typical of SLE but is present in only about 30 percent of patients.

The butterfly rash is often confused by patients and by physicians with a similar red rash which also is over the cheeks. This rash is called acne rosacea. It does involve the areas of the outside of the nostrils and does involve the folds between the nose and the outer part of the lips. In addition, pimples may be seen on top of the red rash in acne rosacea.”

Malar rash or rosacea?

Treating malar rash is best accomplished by treating the lupus, and usually Plaquenil is prescribed.  Patients are encouraged to stay out of the sun to avoid excessive UV exposure, which triggers the rash.  Here are some tips the LFA recommends for reducing sun exposure:

1. The first rule is to stay out of the sun, especially during the middle of the day.
2. The second rule is to wear a good protective sunscreen of SPF 30 or higher. Use the sunscreen on all exposed skin areas, including the hands.
3. The third rule is to wear a hat with a broad brim.
4. The fourth rule is to wear long sleeves.

Not make up, it is malar!

Lupus malar rash and an unforgettable social reaction!

Once, I had very uncomfortable and unforgettable moment at work because of my malar rash.  A woman who really didn’t like me or our managing attorney very much began belittling me in front of other co-workers.  I was bewildered as this woman began broadcasting her catty critique, “didn’t you get a little too carried away with your rouge this morning?” assuming the unbalanced redness on my cheeks was because I had used my cosmetics without skill.

I will never forget standing there, with my mouth gaping, wondering what in the world she was talking about! I wasn’t even wearing any cosmetics that day, not even lipstick.  Unbeknownst to me, my malar rash had erupted during my morning bus ride to work from the sun exposure during my three block walk to my office.  I had not looked in mirror since leaving my house, so I was caught completely off guard by her stinging comment.

Forgive the unkind, unaware, rude people

This woman had an unkind habit of making fun of people to try to lower other people’s opinions of them, I suppose in misguided efforts to try to make herself  look better.  It is sad that some people think that making fun of someone who is different, albeit diverse from themselves, is somehow a social “sport.”  I think that people who act this way should actually be pitied, and even prayed for, but not hated — because of their lack of wisdom, kindness, insight and understanding.  They reveal the true shallowness of their own soul by their rude acts, and they completely miss out on the rich blessings that kindness produces in relationships.

Fortunately for me, a couple of coworkers who were the intended audience for her unkind “put down,” instantly arose to my emotional defense.  Without me saying a single word in retort, a couple of other coworkers immediately engaged the woman and publicly shamed her for her rudeness toward me.  They spoke directly to her and harshly condemned her behavior!  Others standing by in the room joined in a spontaneous chorus of rebuke.  My coworkers who knew about my lupus recognized it as the cause of my overly red cheeks. After confronting my critic, they turned to me with many encouraging comments.  As for me, for once, I was speechless!

Grateful for lupus awareness

In retrospect, I was very thankful most of my coworkers were lupus aware, and cared enough about me to take up my cause and handle this woman’s rudeness through a little well-timed peer pressure.  Later, I overheard a “water cooler” discussion among other members of the office about their disbelief and disapproval of the woman’s social crudeness, judging it grossly inappropriate for the woman’s supposed professional, economic and social class.

This woman’s stack of degrees and professional position did not impress anyone that morning, but lupus malar rash certainly had an unexpected impact on my day.

[NOTE:  This post was inadvertently published unfinished at 7:00 a.m. using the pre-scheduled posting feature, before I had really finished writing it and including the personal story I felt was very important to share.  When I realized that this morning, I went ahead and completed it over coffee this morning, and re-published the updated version at 9:30 a.m.  My apologies for making major changes to a post after its initial release.  LA 5-22-2012]

Coping with Lupus: Fact #16 – Discoid is the most common lupus

Coping with Lupus: Discoid lupus (the most common form of skin lupus) accounts for approximately 10 percent of all cases of lupus and occurs in 20 percent of those with systemic lupus.  My discoid lupus was most pronounced before I began taking Plaquenil, and after this first baseline drug treatment started, my rashes cleared up on my face, eyelids, hairline, scalp, chest, arms and thighs.  Now, occasionally a few discoid rashes between my fingers, on my forehead or cheek, or my hairline.

Cutaneous lupus

Forms of cutaneous lupus

The Lupus Foundation of America describes forms of cutaneous lupus in an article on photo-sensitivity and lupus:

1) Acute cutaneous lupus erythematosus (ACLE):

• This is also known as the “butterfly rash” of lupus and occurs over the cheeks and nose.
• It often comes on after sun exposure, and is associated with lupus flares.
• ACLE usually heals within weeks without scarring.

2) Discoid lupus erythematosus (DLE):

• The term “discoid” refers to the disk-shaped lesions of the rash.
• The rash occurs mainly on sun-exposed sites.
• The lesions develop slowly and heal over several months, and may cause scarring.

3) Subacute lupus erythematosus (SCLE):

• SCLE is highly photosensitive.
• It usually shows up as many red, circular shapes on the chest, back and arms.
• It is often a little scaly, resembling psoriasis.
• This form of lupus is particularly associated with antibodies in the blood to the Ro protein (mentioned above).
• SCLE tends to heal over weeks or months and is usually non-scarring.
• It frequently comes back after more sun exposure.

Both SCLE and DLE may occur on their own without the presence of systemic lupus.  Although systemic lupus occasionally develops in people who first have DLE or SCLE, it tends to be a milder illness than the usual form of SLE.

Topical steroids

Slather on the steroids!

A Lupus Foundation of America research report about a new drug, Efalizumab, in the Treatment of Discoid Lupus Erythematosus discusses the following about discoid lupus.

Discoid lupus is a form of lupus that affects the skin (cutaneous lupus). In most cases the discoid lupus rash appears on the face, neck, or scalp, though it can also show up on other areas of the skin. Severe discoid lupus may result in scarring. The treatments that are used most often for severe discoid lupus are strong immunosuppressants that may have significant side effects, especially when used over long periods of time.

A search on www.webmd.com for drugs used to treat discoid lupus, returned a list that included oral Plaquenil/hydroxychloroquine (brand name/generic,) Thalomid, and Thalidomide, the injectable drugs Kenalog, triamcinolone acetonide and Aristospan Intralesional, and a very long list of 106 different topical steroid medications for application to the lupus discoid skin lesions.

Drugs for Cutaneous Lupus

Thalidomide is a drug that has a strong negative stigma about its known relationship to birth defects in the babies of women who used it during pregnancy for their morning sickness. It has been found to be effective in treating some cases of lupus.

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 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.