What It is Like to Have Lupus - My Story

Today I'm going to touch on what it's like to live with Lupus.  Lupus is the disease from which all my other medical complications & diseases have sprung. 

 

So, I'm again going off outline to put this out there.  Many people know I have Lupus.  But most don't really understand what that entails.  To better understand me, you need to have at least a rudimentary understanding of that.  Because Lupus is a big part of WHO I am and WHY I am and HOW I am.  So, here goes:

I have Lupus.  Otherwise known as Systemic Lupus Erythematosus (SLE). A mouthful.  There are different types of Lupus, but I have a severe form of the SLE type.

What IS Lupus? The medical jargon will tell you that it’s an autoimmune disease that may attack any and all living tissue in the human body.  You never know what it will attack or when or even why. 

 

The truth is that doctors do not really understand this disease.  Most doctors have only ever heard of Lupus and have a vague understanding that it’s “not a good thing.”  There are specialists, Rheumatologists, whose job it is to treat Lupus and other autoimmune disorders, like Rheumatoid Arthritis, Multiple Sclerosis, etc.  Which is good, since other autoimmune disorders like to “piggy back” Lupus, so most of us with the disease also have several more disorders along with Lupus.  The following is an excerpt from the Lupus Foundation of America.  It gives a simplistic, generalized definition of Lupus.

From The Lupus Foundation of America:

“In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs ("foreign invaders," like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues ("auto" means "self") and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.

Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better).

These are some additional facts about lupus that you should know:

• Lupus is not contagious, not even through sexual contact. You cannot "catch" lupus from someone or "give" lupus to someone.
• Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease, as described above.
• Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.
• Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.
• Our research estimates that at least 1.5 million Americans have lupus. The actual number may be higher; however, there have been no large-scale studies to show the actual number of people in the U.S. living with lupus.
• More than 16,000 new cases of lupus are reported annually across the country.
• It is believed that 5 million people throughout the world have a form of lupus.
• Lupus strikes mostly women of childbearing age (15-44). However, men, children, and teenagers develop lupus, too."

 

But this just tells you what Lupus is and what it isn’t.  It doesn’t give a glimpse into the long list of things that Lupus does to a person.  It doesn’t tell you what it is like to live with the disease.  And there’s a good reason for that.  Each person with Lupus will have an experience that is unlike any other person’s.  Though we can all have similarities, each of us presents differently.  That’s one of the things that makes it so difficult for doctors & researchers to find treatments that work, much less a cure.

 

If you want to know the profound effect this disease has on day to day living & decision making, a great resource is “The Spoon Theory” by Christine Miserandino.  Here’s the link: http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

And while her Spoon Theory is an awesome resource for showing people how Lupus can affect your daily schedule as it relates to fatigue, it’s still not going to show you how  Lupus affects you on a personal level.

 

Recent Flare after Surgery - January 2013 - "Butterfly" Rash

 

So, I’m going to attempt to give you a glimpse into what having Lupus is like, symptom wise, for me. 

 What does it feel like to have lupus?

Imagine having to wake up every day & the first thing you do is look at a watch like device embedded in your wrist that has just one button on it.  In order to begin your day, you have to push the button.  You have no choice – you must push the button.  You cannot remove the device.  It is a part of you. 

You have no control over the button.  You don’t know why you have the device.  One day, you woke up & it was there.  There is NO way to remove it.  No one knows why you have the device & others don’t.  There are others out there with similar devices, but no two are exactly the same.  The only thing in common is that anyone with this device HAS to push their button.  The button determines what kind of day you’re going to have physically & mentally.  In its harshest terms, the button determines your ultimate fate – whether you live or die.  And how long you live and with what quality of life.  Everything is determined by the button.

The “experts” don’t even understand how the button works.  They only know that you have to push it.  The twist?  You never know what happens when you push it.  You might, when you’re lucky, be given a small reprieve.  The button will grant you a “good” day.  This day you might only have a bit of joint pain and stiffness that goes along with the general fatigue and malaise and fever.  Other times, the button sends you on a spiral of perplexing, agonizing, painful journeys. 

But no matter what, every day you’ll wake up with a “standard” feeling.  The button decides what is added to that feeling.  The standard feels like what most people experience when they have a mild case of the flu.  Achy, fatigued, feverish, and out of sorts. 

For those of us with Lupus, that’s a normal day with no complications. And then we “push the button.” And we pray for a good day.

What can Lupus DO?

It can cause a lack of focus and concentration, where the simplest of tasks can confuse you and leave you feeling like you’re walking around half asleep or drugged.   It can affect your speech.  You might be talking and thinking that the words you’re using are the right ones.  You learn quickly by people’s perplexed reactions when your thoughts & actual words are not adding up.  A funny story my daughter & I relate is the time I asked her to “button up the floor.”  She immediately got the broom & started sweeping.  At this point, she’d learned to “translate” a good bit of what I said into what I meant.

Sometimes the joint pain and stiffness are so bad, it can take up to an hour just to get out of bed, slowly easing each of your joints until you’re able to stand without falling. I miscalculate & fall often.  Other times, I find that I wake up & cannot move my legs at all.  I suffer temporary paralysis that can last from a few hours to several days.

Other times I can feel the heavy, pulsating beat of my heart, causing me to be dizzy, exhausted, anxious and worried.  The anxiety builds until I get short of breath and faint.

Most days, my stomach is upset or becomes upset if I eat anything.  I can be starving and craving something to eat, but the minute it hits my stomach, I’ll feel as though I’ve got the stomach flu. I can’t travel far from a restroom if I’ve had a full meal as the likelihood of digestive distress is high.  But, because of the medicine I’m on that saves my life, a steroid called Prednisone, I’m always a hungry and thirsty and I gain weight even though I often take in very few calories a day.

My skin itches and tingles and burns every day, all day long. I have the kind of pins & needles that make even clothing brushing against my skin feel like fire all over, in my scalp, down my back, on my chest, and down my arms & legs. The simplest of touches, a hug, a kiss become torture.  My veins feel like they are filled with battery acid.  They are at once on fire and yet I’m chilled to the bone and no amount of blankets brings relief.

My head will pulsate and my vision will wax and wane.  Sometimes my prescription glasses make things clearer and sometimes I have to remove them because I can’t see with them on. 

Often my head feels heavy and it pounds, feeling as if it will explode. I will often get migraines and most of the time it feels like a migraine is just one wrong movement, one sneeze, one laugh away. When the migraines hit, I have visual auras, nausea, and such extreme pain even the slightest sound will be torture.  I have to wait it out, lying flat in a dark room with no noise and no light until it passes.  This can last for hours, days and even at its worst, weeks.  The worst was in July & August of 2011. After many trips to the ER for CAT Scans (because they thought the cancer might be back), and trying various drugs, I was put on Topamax.  A commonly prescribed anti-seizure med used for migraines.  On August 6, 2011, I woke up completely blind.  The medicine had caused acute angle closure glaucoma. A story (like many) I'll save for another day.

Many times during the month, my mouth and nose are full of sores that start out itching and then burning, before turning into blister like sores that break & crust and hurt dreadfully, making eating and drinking a task of torture. The nose sores get so out of control that at times, my septum has been “eaten” through – on the inside as well as outside where you can see it.  On my face, the sores will often resemble acne at first.  But then it becomes obvious they aren’t. 

Mouth Lesions

These sores most commonly break out on my face, but when it’s bad, they’ll break out all over my scalp (brushing my hair becomes torture), all along my arms, back, legs, even the bottoms of my feet.  They can last for weeks and most tend to leave behind scars.  Sometimes, the sores are not well defined, it’s more like the skin just loses its elasticity and splits apart.  These are usually the kind that occur in the corners of my eyes, the corners of my mouth, and along any “seams” on my body. 

Sometimes I awake in streaks of blood from the sores breaking in my sleep. Sometimes, when my platelet counts are really down, I can’t clot and the really big sores will break & the bleeding won’t stop. These tend to happen when the skin gives way over a major artery or over previously scarred skin lesions. I have to have these excised and this leads to even bigger scars.  Other times, my back will be so covered in sores that I cannot comfortably lie down or sit down.  It’s on these days that I have to struggle to find a way to lie on my side, pillows propping me up, and change positions constantly because of the pain.  I cannot function on these days.

Most days, I have difficulty breathing. Breathing in feels like my lungs can’t fill to capacity.  Breathing out is often even more difficult because I have air trapped in my lungs & I cannot seem to get it out.  I feel it popping & hissing & gurgling, but the breath won’t escape.  It feels like what I imagine drowning is like.  Breathing itself causes excruciating pain.  It’s at these times, I ask myself…”Is it my heart? Do I have a clot? Am I about to die?” Those are often very long nights. I ride it out until it passes. Sometimes, I write messages to my family in the event they find me dead in my bed.  Because I want them to know that I was thinking of them & loved them.  And then, when it finally passes, I tear up the messages & throw them away.  Keeping them feels like a bad omen.

I have heart palpitations, known as HPV’s.  These come from the pulmonary hypertension caused by the scarring in my lungs.  On days when the palpitations come every minute or less, I’m often feeling as though my heart will just leap out of my chest or stop suddenly.  It’s frightening.  It also leaves me dizzy and lightheaded.

Lupus isn’t picky about which part of the body it messes with. And it likes to hop around so that one day your heart is being attacked, the next your lungs, and maybe it will then move on to your kidney, liver, brain, spleen, bladder, etc. 

I suffered for years with “mysterious” illnesses (fevers reaching 105 degrees, multiple cases of pneumonia, extreme fatigue, infections of multiple organs) that no doctor could really explain.  I was thought to have pernicious anemia, leukemia, etc.  When they finally diagnosed me with Lupus, I had had severe kidney damage due to Lupus. 

For this damage, they put me on Cytoxan (one of the most vile, harshest chemotherapies).  Why chemotherapy?  Because chemo systemically attacks your immune system.  This is a negative side effect when you’re on it for cancer.  In Lupus, this is the side effect they want to happen.  By driving down your immune function, the chemotherapy effectively “slows down or stops” Lupus from attacking its own tissues.

The Cytoxan worked to save my kidneys.  But not without a high cost.  The chemotherapy caused damage to multiple systems & organs.  It also caused bladder cancer.  I will save my cancer story for another day.

These are a few of the symptoms that plague me the most.  Then there are the flares.  Flares are times that multiple symptoms will come together and multiple body systems will come under attack.  It is in these times we are at our most vulnerable.  It is during the FLARE that most people who die, will die of “Lupus Related Complications” – most often of: kidney failure, heart failure, sepsis, or respiratory failure.

The Lupus Butterfly - One of Our symbols - Used because of the Butterfly Rash - But Symbolizes HOPE

Then there is the emotional toll that comes with having Lupus.

Vanity never really dies.  Through all the changes this & the other diseases have caused, I still, like everyone else, want to be at the least not offensive in my looks.  I hope for attractive.  But this disease attacks every single part of your body, so I have my hair fall out & thin, sores& lesions, easy bruising, wounds that won’t heal and the changes in body weight and these make it hard to feel anything but ugly.  This, too, can take its toll mentally.

I struggle with the words to describe what its like emotionally, so I’m going to borrow the words that a friend provided in case we needed help describing our lives to family and friends.  I cannot improve upon her words:

 “In a sentence…my body has forgotten how to mechanically run on its own. Each individual part is running independently of the others, in a type of mutiny. As the patient, I try to do my part by learning to adjust and following my doctor’s advice, although I have to say, a healthy amount of denial of my fate has helped me live my life to the fullest.

Along with the tangible comes the intangible, the parts of this disease that cannot be measured in a blood test, yet are very much a part of our lives. I am talking about the fatigue. It is debilitating. Do you remember the required obstacle course you were forced to navigate in gym class? Now imagine every day with an obstacle course laid out before you in the form of daily tasks. Only this time, when you finish it, you are required to repeat it again and again until you go to sleep that night. Or, imagine that the air surrounding your body is made of peanut butter--imagine the energy it would take to just walk--that is the type of fatigue I am talking about.

It is when every nerve ending in your body is pulsating with electrical charges, because it has worked overtime all day. And as ironic as it sounds, for some reason when it is time to retire for the night, your brain has disconnected the messages to your body that says it is time to sleep. Insomnia is one of the most common symptoms we Lupies share.

I feel, every day, that I have been given a test of survival. Despite the strength everyone says I have, the sorrow of the abandoned child lives on the surface, at the back of my throat, as a constant reminder of just how vulnerable I am. My world is different from everyone else’s. I am never on solid ground; it is always shifting beneath my feet.  There is no cure for lupus. If the numbers become good, it doesn’t mean I am cured or had a misdiagnosis…it just means the wolf is caged, for only a brief period of time, and she will be back.

On really bad days, I feel all of these things at the same time.

Lupus - The "Wolf" is Always Lurking

Lupus patients often refer to this disease as “The Wolf” because of its name. But it is also a perfect visual of the characteristics that this disease holds. As with Red Riding Hood, you are never completely out of the woods and safe. Everyday issues that most people have to address become magnified for us. With every slurred word…with every twinge of pain…with every rapid or slowed heart rate or indigestion, we wonder…is that the wolf lurking and licking at my heels?

With the complexities of a disease that lives in all areas of my body, it is helpful for me to give it a face. But along with that face is also a sound, the sound of a Jack-in-the-Box: that constant, slow turning of the handle and that awful tune playing in your head. Even when you are receiving treatment and you start to feel better, your brain never lets go of the thought that the Jack-in-the-Box handle is still slowly turning, and eventually the wolf, dressed like a clown, will pop up again.

Every night when we lay our heads down to sleep, it is as if we are put adrift on a raft, uncertain of where we will be when we wake up. Every morning is different. The only thing that is certain is that things will change, no matter how good we feel. There is a constant state of uneasiness, that you realize is now your constant companion. And then we awaken and do it all again--every single day-- until a cure is found.” – Jenn Schoch, Lupus and Me

 
And though, it might seem as though I'm being negative, I'm really only trying to give an honest account of what it's like to have Lupus.  But do not believe that I have given up hope.  HOPE is what keeps me going.