Reality in Love

“  . . . for better, for worse, in sickess, and in health . . . “  Remember those words from your or a friend’s wedding?  They are full of promise; full of the expectation that the one we love and who we believe loves us will always be in our lives.  Not so.  The divorce rate among partners where one of the members is chronically ill is 75%.  Why?  Because for the chronically ill the burden of failing to meet their partners’ expectations is overwhelming.  For the partner of the chronically ill, it is a huge responsibility that wears upon their feelings of love, regardless of how much they do love the chronically ill person.
In all marriages, of course, both partners will eventually go on to develop health problems.  But when one partner develops a chronic, debilitating illness in their 40’s-60’s, it can create in the other partner a feeling of having been cheated out of the rosy future that was imagined by both partners when the marriage was formed.
All marriages are formed in the expectation of a rosy future.   Imagine how difficult it must be when one, or even both, partners go on to develop a chronic illness.  Dreams are lost, expectations are dashed, and the future is made unsure.  Imagine even more when one of the partners develops an illness that seems to be physically invisible to the other partner.  This is the case when a partner develops an autoimmune disease which does not readily display its physical effects.  The healthy partner may feel that their ill partner is just being a faker or manipulator.  The healthy spouse may feel an incredibly difficult burden to ‘fix’ their newly-chronically ill partner.  They may feel that they have an unfair percentage of housework, childcare, financial, or other burdens has been placed upon them due to their partner’s dubious illness.  The ill partner may feel a continuous need to pretend that they are not ill, that they can indeed fulfill their healthy partner’s expectations, and this can lead to both partners failing to really understand the others’ needs.  Both partners feel that they must be ‘on’ for their partner, regardless of their real feelings.  The healthy partner may feel that they must put in extra hours to manage the home, finances, children, etc., while the ill partner may assume an unfair burden of guilt for an illness over which they have no control.
Will the partnership survive?  75% of these partnerships fail.  Feelings of frustration, guilt, anger, and more quickly destroy any love that was present at the beginning of the partnership.  The partners think first of their own needs first and fail to understand the needs of the other partner.  Most marriages begin with feelings of hope in the future.  Couples meet, plan futures, marry and share family events, perhaps have children, celebrate holidays together, etc.  Then one day one of the partners suddenly becomes chronically ill.  The words ‘in sickness and in health’ become very real.  The couple, who once thought nothing of late-night dates, drinks after dinner, dancing until dawn, finds that activities must end as early as dinnertime for the newly-chronically ill partner.  Parties are no longer possible if they extend beyond dinnertime.  Evening activities with family members must be handled by the well partner only.  Depending on the previously negotiated separation of partnership responsibilities, the well partner may suddenly find that responsibilities assigned to the newly-chronically ill partner are no longer being handled in a timely manner; bills are not being paid on time, grocery shopping trips must be postponed, laundry is not done in a timely manner, etc.  The well partner begins to complain to the chronically ill partner about his/her lack of meeting their understood duties of the relationship, the ill partner’s self-esteem plummets, aggravating the already negative situation.
Frequently the newly-chronically ill partner begins a huge learning curve to understand their illness(es), while the well partner still is not convinced that the ill partner is actually ‘that’ ill.  Fatigue limits activities, weight gain and fatigue limit intimate moments between the partners, and side-effects of necessary medications or surgeries may cause unattractive weight gain or other health issues that the well partner may find unattractive.
The well partner feels an unfair burden of financially providing for the family while the newly-chronically ill partner ‘sits on their butt all day at home.’  Frustrations build, anger flares, and soon the formerly happy couple is in trouble.
Can these issues be resolved and can the marriage be saved?  There is a slight 25% chance.  What to do if the partners decide that the marriage should be dissolved in order for the partners to individually pursue their best futures?  Or perhaps the well partner may decide to ‘explore their options’ by taking a work assignment out of state or country, taking on an extra-marital lover, or otherwise stretching the bonds of the marriage.  He/she may explore options for a new future or a revised plan for the existing future with their newly-chronically ill partner.
All the while, the newly-chronically ill partner may decide that it is futile to try to save the deteriorating marriage, may withdraw even further into a depressed mindset.   He/she may fail to thrive, may cut off contact with family and friends, and may even contemplate suicide because of overwhelming feelings of guilt and frustration.
It is very important that all partnerships wherein one or more of the partners become newly-chronically ill engage in professional counseling.   The goal of the counseling need not be pre-determined but must be open-ended and at the end of the counseling hopefully both partners will have a better vision of their personal, and the partnerships’ future.

Get UP!

How DOES someone with lupus, another autoimmune disease, or combinations of more than one autoimmune disease get back to their lives both physically and emotionally after being knocked down?  Please keep this foremost in mind:  the development of any significant and life-changing illness is not a choice.  No one asks to become ill, disabled, and less capable.  Take however much time and utilize whatever resources you need to work through and let go of the guilt and frustration you may feel about your new reality and do your best to look forward, always forward, to living your best with your remaining capabilities.  It may be helpful to take out a notebook, jot down your most pressing thoughts, fears, hopes, etc., and visit an experienced therapist. 

It is important to understand that from the moment your autoimmune disease significantly affects your life (i.e., hospitalization, long-term leave or permanent loss of employment, loss of income, loss of friends, loss of spouse or significant other, inability to live independently due to loss of physical agility, and more), your life has been permanently changed.  No different to the aftereffects the sufferer of a first, massive heart attack experiences, you will begin medical treatment to improve your physical condition and to best manage your symptoms.  You will undergo the emotional tangle of shock, denial, fear, sadness, and more as you come to understand that you must let go of old ways and adopt new ways if you want to move ahead in life and function as a physically and emotionally competent and happy person.  You will learn that your body is not the same body as before the onset of your illness and that you must make changes to your work life, activity levels, exercise levels, diet, and more.  You will struggle with your emotions as you try to come to terms with the changes that life has handed to you.  Your relationships will change and some will end.  You will no longer be able to enjoy some of your favorite hobbies. 

But remember, you still do have a life!  It may no longer be in synch with your old hopes and dreams but no one gets a guarantee in life.  The important point to remember is that you do still have a life; you are one of the fortunate people whose sudden onset of a potentially lethal illness has instead morphed into a chronic, life-long illness which you must learn to accept.  Given the choices between death and life, I choose life!

Don’t get me wrong here, I’m no Pollyanna.  I lived with autoimmune problems (see previous posts) for more than 20 years before being diagnosed and receiving effective treatment.  My date with destiny was in 2001 when my immune system went completely crazy and I became desperately ill.  I was asked to retire from my job (after being harassed for more than a year as a slacker for my continuous health problems), lost my income until finally being awarded a disability retirement which I had to take legal action to obtain, lost my health insurance; many of my friends disappeared from my life, and my religious community asked me to resign from my volunteer duties which I did and then heard not a word from them again.  I had to give up every single beloved hobby:  piano playing, sewing and quilting, gardening, and more.  My marriage became chaotic.  Family members accused me of being a hypochondriac and stopped speaking to me. 

The medications I was given to slow the autoimmune disease from becoming lethal caused me to gain 60 pounds over just a few months, I could no longer walk across a room let alone exercise, half my hair fell out, 5 molars cracked and needed caps because I would grind them in my sleep from the constant pain.  I haven’t slept through an entire night since 2001, again due to constant pain.  I was effectively bedridden for a full year but for the first 3 full years I slept in a recliner because sleeping on a mattress resulted in an increase in pain.  At least by sleeping in a recliner I would remain motionless and the pain would not be aggravated.  I developed restless leg syndrome, Sjogren’s syndrome, Raynaud’s syndrome, major depression, narcolepsy, high blood pressure, and more.  I struggle daily with skin rashes, pain, headaches, ringing in the ears, arthritis, debilitating muscle pain, and more.

At one point I begged to die.  I was severely depressed, in extreme pain, and was ready to stop fighting to live.  But my deep personal faith and love for my remaining family and friends helped me to believe that some type of better future might be possible.  So I began physical therapy to get up and move, and then walk again.  I began counseling to understand the emotional toll this awful life experience was taking on me and others, and slowly, slowly began to build a new life.  I redefined ‘success’ away from career, volunteerism, and high achievement to being able to focus on one day at a time, working hard to keep a positive outlook no matter what, and watching to see what each new day would bring. 

I no longer play the piano . . . but I have learned how to sign on to and listen to Pandora on the computer.  I no longer garden . . . but I do sit in the shady areas of our yards and watch the birds fly about in the sunny areas of our yards.  I can sew again but for only a few minutes at a time but I’ll take it!  I can quilt again but only on days when my pain, stiffness, and headaches are minimal.  I rarely leave the house due to very low energy levels, pain, etc., but have learned to thoroughly enjoy classic movies on cable TV, all the good books I’ve always wanted to read, learning to make new recipes for meals, completing my family history and family tree on the computer, and now blogging on this blog!  I have also found an online religious community of members who have lifestyles similar to mine.  I volunteer by designing, sewing and quilting small quilts for babies and other people in need.  I spoil my pets, talk with my remaining friends by phone, and crack jokes about the ‘advantages’ of having an autoimmune disease such as:

When my husband leaves for work in the morning the automatic thermostat goes down to 66 degrees because I always have low fever – hey, lower fuel bills!

I hardly leave my home, making my ‘carbon footprint’ is so small as to make up for the use of several SUV’s by our neighbors!

I have adopted 3 otherwise non-adoptable dogs who required an at-home new owner in order to deal with and train away their ‘bad’ behaviors and/or deal with their illnesses

I personally keep our local FedEx, UPS, USPS, and other delivery people employed as I shop online for groceries and everything else and have it delivered to my doorstep (I hold the record for most deliveries of anyone in our neighborhood J

. . . And more!

Next edition:  Reality in Love

Do you suspect that you have lupus?  According to the American College of Rheumatology (ACR), (http://www.lupus.org/answers/entry/lupus-diagnostic-criteria)
a diagnoses of lupus MUST fulfill "at least four of the criteria on the list, either at the present time or at some time in the past" in order to make a diagnoses of lupus (it is VERY important to keep a daily journal of your physical symptoms):

1. Malar rash – a rash over the cheeks and nose that looks like a heat rash, often in the shape of a butterfly and may or may not be red and raised or bumpy
2. Discoid rash – a rash that appears on any part of the body as red, raised, disk-shaped patches similar to that of ringworm but not always itchy, and persist for more than a week
3. Photosensitivity – a reaction to sun or light that causes a skin rash such as malar rash, hives or heat rash
4. Ulcers – sores appearing in the mouth and/or nose, or on the skin and that have no other cause
5. Arthritis – joint pain and swelling of two or more joints, especially the fingers and toes, in which the bones around the joints do not become destroyed such as with rheumatoid arthritis but do swell and are painful and stiff and can feel hot
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 and/or pain in the kidney area of the back, dark color urine, foamy urine, and/or frequent nighttime urination.  It can also display as an inability to urinate for 24 hours or more.
8. Neurological disorder – seizures or psychosis which can display as periods of 'eyes-wide-open non-responsiveness' or typical active seizures, or memory loss
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 –anti-DNA or anti-Sm or positive antiphospholipid antibodies
11. Abnormal antinuclear antibody (ANA) which appears in several blood test results over time

Lupus also causes the following symptoms which may or may not be considered by medical professionals in diagnosing lupus but it is important to document these symptoms in your daily journal:

1.  Symptoms that come and go, change over time, and often imitate other illnesses such as MS (weakness, numbness in the extremities)
2.  Joint pain that may not fall within the criteria for arthritis
3.  Skin rashes on any part of the body
4.  Overwhelming, unrelenting fatigue that lasts for days or weeks and does not relent even if you rest and/or sleep
5.  A low-grade fever that lasts for days or weeks and does not relent and cannot be related to any other known disease or disorder
6.  Stiff, tender, and swollen joints that feel worse in the morning
7.  Extreme dryness in eyes or mouth that lasts for more than a few weeks
8.  Painful fingers and/or toes that become pale, red, or blue and/or feel numb and painful
9.  A history of strokes, blood clotting problems, and/or miscarriages
10.  Unexplained periods of confusion, memory problems, or 'brain fog' that lasts more than an hour at a time
11.  Unexplained swelling in legs and ankles on both sides of the body at the same time
12.  Sudden, unexplained hair loss
13.  Sudden, unexplained weight loss
14.  Sudden, unexplained abdominal pain that is made worse when you breathe

As you can see, lupus encompasses many symptoms that mimic other diseases.  And because the symptoms of lupus come and go, change over time, and mimic other diseases, it is very important that you document your symptoms in a daily journal, visit your physician frequently, insist on diagnostic testing, and press for answers.  There is no single test that makes a diagnoses of lupus; rather lupus is diagnosed over time and as a result of the presence of any or all of the above symptoms at any time.  Therefore, it is critical that you see your physician for each and every medical problem, document each and every medical problem in a daily personal journal, and NOT allow your physician to pass your medical problems off as stress, etc.  If necessary, seek multiple medical opinions.

As your health problems fluctuate over time, frequently change, and begin to frustrate you, your family and friends, and even your physician(s), it is typical for you, your family, friends, and your physician(s) to wonder if your health problems are 'real' especially if one or more of the physicians you have visited are baffled by your symptoms.  Believe in yourself and in your own perceptions of your health problems - don't give up seeking a diagnoses until you receive it!  Ask to be referred to specialists, ask for additional tests, and don't give up!  

Additionally, question your relatives about their chronic health problems and those of your family members including grandparents, great-grandparents, aunts, uncles, etc.  It is very common for autoimmune disorders to pass down through family members.  Remember, lupus has a known genetic component (that passes down to family members from ancestors).  Be sure to tell your physician if any family members suffer from other autoimmune diseases including:  type 1 diabetes, multiple sclerosis (MS), rheumatoid arthritis, sclerodema, psoriasis, inflammatory bowel disease, Hashimoto's disease, Grave's disease, Addison's disease, Celiac disease, or Sjogren's disease.  

All autoimmune diseases have one or more common genetic components.  It is not know why different individuals go on to develop different autoimmune diseases (see list above) but what is known is that family-related common genetic components in addition to environmental factors result in the development of all autoimmune diseases.  Environmental triggers are known to be one or more of the following:  bacteria, viruses, toxins, cancer cells, and blood tissues from another person (i.e., back flow of blood from fetus, through the placenta, to pregnant mother).  The immune system then produces antibodies in an attempt to destroy the bacteria, viruses, toxins, cancer cells, or foreign blood tissues.  In a person with a genetic predisposition to an autoimmune disease, the immune system becomes confused between the person's own healthy body tissues and the invader and begins to destroy those tissues.  This destruction can take the form of one or more of the known autoimmune diseases listed above.

I began to display an important symptom of autoimmune problems (high ANA count) after the birth of my second child at age 21, followed by a difficult divorce at age 22.  By January 1980, in my early 20's, I was working full-time, raising my 2 young children as a single parent, and struggling financially.  At the age of 25, my colon obstructed (a symptom of lupus) and I nearly died, and was hospitalized.  This repeated twice more in the next 3 years.  I was also diagnosed with acid reflux, irritable bowel syndrome, a non-functioning esophagus, and a hiatal hernia.  At age 27 I began to develop extreme abdominal pain and was diagnosed with a pelvic inflammatory infection from unknown causes.  At age 28 I underwent a complete hysterectomy and removal of a significant amount of scar tissue in my abdominal cavity from the unknown infection.  I continued to suffer serious health problems including painful muscles and joints, skin rashes and extremely dry skin, low red and white blood cell counts, insomnia, rashes, and hives that became worse in the rare Alaskan sun (where I lived at the time), difficulty concentrating and focusing on work and home issues, a constant and debilitating fatigue, an intolerance to cold, hair loss, fluctuating diarrhea and constipation, mouth ulcers, dry eyes that required use of a product called Lacrilube which is used by post-cancer patients, numbness and tingling in my hands and feet, and more.  

At age 33, just weeks prior to the planned wedding to my second and present husband, I suddenly doubled over in pain one evening, was rushed to the emergency room, given tests and diagnosed with an infected, inflamed, obstructed gall bladder containing many gallstones.  I underwent immediate surgery followed by a short recovery period, marriage and the challenge of blending my new family.  About one year later I developed a case of shingles.

Ah, it never rains but it pours, huh?  I began to joke with friends that the last organ to safely remove from my innards would be the spleen.  Maybe, in the spirit of preventative maintenance, I should just go ahead and have it removed NOW?  ha ha!

In 1999 my husband was offered, and accepted, a new IT position in another city and I followed.  He and I both began new jobs and a new life in our new city.  Within 4 months of beginning my new job, I experienced a week-long period of vertigo, nausea, and fatigue that left me sleeping in bed for nearly the entire week.  I sought medical treatment, was diagnosed with a possible case of multiple sclerosis, and placed on medications.  The crises passed but was followed a few months later by what seemed like a bad case of the flu.  I again sought medical treatment, was diagnosed with Sjogren's syndrome and was placed on additional medication.  A few months later my father unexpectedly passed away and I traveled by airplane to his residence to handle the funeral and other arrangements.  Following his funeral I returned to work.  Just 6 weeks later and on a Monday morning my husband and I stumbled from bed to prepare ourselves for the work day.  As we met shortly afterward in the kitchen, he said with a shocked face, "what's wrong with your face?"  I ran to the mirror to see that my facial lymph nodes were so swollen that I could have been mistaken for Alvin the Chipmunk!  I had the mumps!

The doctor confirmed a diagnoses of mumps that same morning and I was ordered by the Public Health Service to stay home and in isolation for the next 6 weeks to keep the disease from becoming a public menace.  Everyone at my workplace, as well as my husband, was required to get a MMR shot if they had not already had one in the past.

I returned to work after the 6 weeks but only 4 months later in February 2002, as I awoke one morning for work, I was unable to raise out of bed.  My entire body was in such pain that I could not get up.  I again sought medical treatment and after many, many tests was finally diagnosed with Undifferentiated Autoimmune Disease, otherwise known as Connective Tissue Disease, as well as Fibromyalgia.  The rheumatologist I saw said, and I quote: "your immune system is like a runaway train, going full speed towards a brick wall, with no one at the controls and if you don't make my recommended changes NOW you will go on to develop a full-blown autoimmune disease that may take your life." 


Wow.  I finally knew the name of the devils that had tortured me since the age of 22.  Each and every medical issue, hospitalization, prescribed medication, surgical necessity, etc., could be traced back to a historically overactive autoimmune system that now had apparently gone completely out of control.  Maybe I would die - we wouldn't know for months.  I went home.  I cried.  I called work and went on extended medical leave.  I went through all the usual stages of grief.  I followed my doctor's advice, took all the prescribed meds, and hoped for the best.  Six months later he concluded that my autoimmune system had calmed down and that I would not be one of the extremely unlucky 10% of people who die within one year of being diagnosed with a serious autoimmune disease.  BUT I still was basically bedridden and this would continue for almost an entire year.

Tomorrow's edition - How to Get UP! and on with your life even if you are living with a devilish autoimmune disease(s)

Lupus' Devilish Friends

Lupus has many annoying, devilish friends.  As if Lupus itself isn't difficult enough to live with, the Friends of Lupus make life . . . challenging in the extreme.  People with Lupus may develop feisty relationships with none, some, or all of the Friends of Lupus during their lifespans.  The many, many symptoms of the Friends of Lupus make everyday a fun, game-show-type of experience!  Only a visit by Bob Barker could make waking up in the morning more fun. 
Scleroderma: causes body-wide pain and stiffness from skin hardening and thickening, from the body's over-production of collagen. 
Rheumatoid Arthritis:  causes pain, swelling, and stiffness in mainly the fingers and wrists, from the body's immune reaction to it's own synovial fluid within the joints.
Raynaud's Syndrome:  causes pain, discoloration, numbness, and a feeling of pins-and-needles in mainly the fingers and toes, from the body's reaction to cold temperatures by constricting veins resulting in the restriction of blood flow.  Extended exposure to a cold climate could be extremely dangerous.
Sjogren's Syndrome:  causes extreme dryness of the eyes and mouth, from the body's destruction of it's own tear and salivary glands.
Fibromyalgia:  causes long-lasting, body-wide pain and tenderness in the joints, tendons, and muscles, and the cause is currently unknown but is believed to be associated with overactive nerves in the body.
Vasculitis:  causes destruction of veins and arteries when the body attacks and destroys its own cells.
Mixed Connective Tissue Disease, also known as Undifferentiated Autoimmune Disease:   I call it the Whack-A-Mole-Game Disease because it is defined by symptoms from ALL of known autoimmune diseases, the symptoms come and go and change over time, making the diagnoses and effective treatment of any one of those diseases impossible.  Hence, the sufferer feels like he or she is involved in a perpetual Whack-A-%&#*-Mole game where most of the symptoms are not visible on diagnostic tests (x-rays, blood work, physical exam, etc.) and so the sufferer also experiences extreme frustration when meeting again and again with various medical specialists who become equally frustrated when a specific diagnoses becomes impossible.  Most sufferers are eventually referred to psychiatrists resulting in the sufferer wondering 'am I just crazy?' as his or her world begins to fall apart.

. . . AND MORE!  Are we having fun yet?


Because a diagnoses of Lupus and its Friends can take anywhere from several to more than 20 years (remember that the symptoms come and go and constantly change) most people spend years in pain, frustration, illness, and a depressed realization that something is wrong with them but because it defies diagnoses, they also experience the following:

* medical expenses exceeding the norm, which stresses family budgets
* provision of too many, and some unneeded, prescriptions (and their side-effects) by well-meaning medical professionals
* performance of unnecessary surgeries (and their after-effects) by well-meaning medical professionals in the search for a diagnoses
* loss of employment or restriction of upward mobility due to the employer's perception that the employee is not really sick but just an abuser of his or her personal and medical leave
* loss of important relationships as frustrated family members, friends, and others come to view the sufferer as a hypocondriac, 'needy' person, and or just lazy, depressed, and boring
* loss of the fun and meaning in life because energies are low, emotions are high, and physical pain is overwhelming at times

In the frenetic lives of today's modern working woman, some or all of the symptoms of Lupus and the Friends of Lupus are frequently attributed to over-work, stress, depression, family problems, hormonal issues, and more.  It's enough to convince any woman that maybe she really is just stressed, overwhelmed, and needs to 'suck it up' and march forward without complaining.  Women's propensity to place the needs of others above their own, especially when family and friends are concerned, only makes life more difficult as they attempt to ignore their physical and emotional symptoms and take care of everyone else.  Men fare no better as they do their best to provide and 'be a man' as it is said.

Tomorrow's edition - Believe in Yourself and how to handle your chronic, possibly not yet diagnosed and treated autoimmune disease.

What is Lupus?

What is lupus?  Thank you for inquiring.  Here are some fast facts about lupus, courtesy of this webpage:  http://www.niams.nih.gov/Health_Info/Lupus/lupus_ff.asp   I have creatively edited the facts for your interest.

Simply put, lupus is an autoimmune disease wherein your body's immune system, which is designed to attack foreign substances in your body, decides that your own body is a foreign substance and attacks your own healthy cells and tissues. Go figure!  Guess you could call this Superwoman on hallucinogenics.  This can damage many parts of the body such as the:

• Joints
• Skin
• Kidneys
• Heart
• Lungs
• Blood vessels
• Brain  (brain?  uh, isn't that a bad think?  thing?  I forget which)

I have the most common type, systemic lupus erythematosus which affects many parts of the body. Other types of lupus are:

• Discoid lupus erythematosus—causes a skin rash that doesn't go away
• Subacute cutaneous lupus erythematosus—causes skin sores on parts of the body exposed to sun
• Drug-induced lupus—can be caused by medications
• Neonatal lupus—a rare type of lupus that affects newborns

Anyone can get lupus, but it most often affects women (as if we don't already have enough on our plate!)  Lupus is also more common in women of African American, Hispanic, Asian, and Native American descent than in Caucasian women.  I am a Caucasian woman which makes me a rare lupus patient - ask me if I'm happy about that - NO!

The cause of lupus is not known but research suggests that a person's genes in combination with currently unknown environmental exposures triggers the disease.  The symptoms of lupus include :

• Pain or swelling in joints (don't make me move around too much because hearing me say 'ouch, ouch!' a lot gets annoying even to me)
• Muscle pain (all the pain and discomfort of the day after an intense workout with heavy weights but without any of the benefit)
• Fever with no known cause (feels like a never-ending menopausal hot flash)
• Red rashes, most often on the face ( . . . and also on the arms, lets, stomach, etc.)
• Chest pain when taking a deep breath (which makes it soooo fun to, well, simply move around)
• Hair loss (call the plumber, the shower drain is clogged again)
• Pale or purple fingers or toes (ha ha, it really freaks people out when you try to write a check at the grocery store)
• Sensitivity to the sun (say goodbye to those wonderful Hawaiian vacations)
• Swelling in legs or around eyes (at the age of 23 you are buying support hose and boxes of eye cream)
• Mouth ulcers (avoid salty, crunchy, spicy, and any other good tasting foods and settle for mashed potatoes instead)
• Swollen glands (get used to looking like you have a case of the mumps - permanently)
• Feeling very tired (tired?  no.  try exhausted.  similar to the feeling when you initially wake up from invasive surgery in your hospital bed and simply cannot keep your eyes open as your body fights to heal itself and I am NOT exaggerating here)
• Headaches (migraines that last for weeks)
• Dizzy spells (make sure you are near a wall or other supportive item as you maneuver through the office or home)
• Feeling sad (sad?  no.  Hopeless, severely depressed, or sort of suicidal at times but not sad)
• Confusion (simple questions result in the 'deer in the headlights' phenomenon)
• Seizures (may appear as periods of eyes-wide-open non-responsiveness)
• Memory loss (not all bad.  I spent several years believing I was still 39)
• High blood pressure (the doctor will continually ask 'how is your stress level, dear?' as you hold yourself back from punching him in the nose)
• Eye damage and light sensitivity (are the headlights on newer cars really, really bright???)
• Hives (I can't say enough here that it is important to stay out of the @%*&% sunshine or suffer the consequences of a serious case of very itchy hives that last for weeks)
• Stomach and digestive problems (fluctuating symptoms including acid reflux, nausea and vomiting, diarrhea, constipation, abdominal pain, urgent bladder, and more)
  
  ulcerative colitis, pancreatitis, and liver conditions, resulting in nausea, vomiting, recurring and persistent abdominal pain, bladder infections, and blood in urine - See more at: http://www.mollysfund.org/learn-about-lupus/symptoms/?gclid=CJXOlZ-0krsCFeNxQgodzjYAEQ#sthash.H10y2bI0.dpuf
  ulcerative colitis, pancreatitis, and liver conditions, resulting in nausea, vomiting, recurring and persistent abdominal pain, bladder infections, and blood in urine - See more at: http://www.mollysfund.org/learn-about-lupus/symptoms/?gclid=CJXOlZ-0krsCFeNxQgodzjYAEQ#sthash.H10y2bI0.dpuf
  ulcerative colitis, pancreatitis, and liver conditions, resulting in nausea, vomiting, recurring and persistent abdominal pain, bladder infections, and blood in urine - See more at: http://www.mollysfund.org/learn-about-lupus/symptoms/?gclid=CJXOlZ-0krsCFeNxQgodzjYAEQ#sthash.H10y2bI0.dpuf
  ulcerative colitis, pancreatitis, and liver conditions, resulting in nausea, vomiting, recurring and persistent abdominal pain, bladder infections, and blood in urine - See more at: http://www.mollysfund.org/learn-about-lupus/symptoms/?gclid=CJXOlZ-0krsCFeNxQgodzjYAEQ#sthash.H10y2bI0.dpuf

These symptoms may come and go (making living a normal life impossible).

You may need special kinds of doctors to treat the many symptoms of lupus (this means that you will be bounced around from specialist to specialist and required to undergo many, many tests that will try to determine what you do NOT have in order to make the diagnoses of lupus). After visiting innumerable specialists over a period of 20, yes twenty, years, a diagnoses of lupus was finally made and I was relieved and devastated at the same time.  It it is good to know your enemy but when you find out that your enemy is a life-changing, incurable disease you are stunned.  When you tell them, your loved ones and friends are confused.  Lupus?  What is that?  

Tomorrow's blog edition:  Lupus has friends!