disease
Systemic lupus erythematosus (SLE) is a long-term autoimmune disorder that may affect the skin, joints, kidneys, brain, and other organs.
Most of the people I have shared with about my diseases have never heard of them, or, if they have, couldn't differentiate them from the flu. It is never irritating. How could it be? Before I became intimately involved with the medical field, I didn't know about most anything, and frankly, I didn't want to. If you're not a nurse, doctor, or in some other medical profession, why would you want to know anything about illness? Most of our lives are lived in prevention of sickness, not in the understanding of it. However, I think that becoming more knowledgable would greatly benefit all those who are struggling with something. Let's face it, most of us know someone who has some disease or disorder. If we truly care, we'll educate ourselves on what he or she has; take a vested interest. It does not mean you have to try and cure your friend or loved one, but try to know what challenge they're facing. I will add, that if you are someone with an illness or ailment, if you don't tell anyone, you can't expect them to be understanding of your situation. The door swings both ways, people. As far as I know, no one can actually read our minds - yet.
Moving along.
So. Lupus. That big fat elephant in my blogosphere. This is one of the 'weird' diseases I avoid announcing that I have - sometimes I even leave out that I have it. It usually only causes confusion. It's hard to explain, and seems to me to be the chameleon-esque grandfather of autoimmune diseases. But, let's first discuss how I originally discovered that I had lupus:
Sixteen months ago I had abdominal surgery to treat my endometriosis. Due to the fact that it was an extremely difficult and life-threatening surgery - I traveled to California to be under the specialized care of Dr. Camran Nezhat [professor of Medicine at Stanford University]. Before the surgery, I signed a consent form that my surgery be 'donated' to science for research at UCSF; in doing so, I waived my right to post-operative notes on all procedures. All I knew when they were finished was that I had stuff taken out of my abdomen and I was in a lot of pain. It was not until several months ago that I received the post-operative notes in an envelope from my insurance company. I, being the nerd that I am, carefully read through them several times. I was shocked to find something that didn't add up to a sole diagnosis of Endometriosis. So, I took this new finding to one of my doctors, in combination with a family history of the disease, and suggested that I may have Lupus. It turns out that my assessment was accurate, and I have since been diagnosed with Systemic Lupus Erythematosus. I am lucky to only be in the early stages of the progression of the disease, without renal involvement (so far), however, that means that most medical treatments are out of the question because the side effects would be worse than the actual disease at this point [a common treatment for Lupus is immunosuppression via chemotherapy - yikes - no thank you!] Nevertheless, I was diagnosed with yet another autoimmune disease, and little to no successful treatment for any of them.
Let's talk about the presentation of Lupus. It is usually a disease that is diagnosed by process of elimination, as it emulates the symptoms of so many other possible problems, doctors have to carefully rule everything else out. My case in particular presented with the following:
- Raynaud's Syndrome [Onset at the age of 14 during winter soccer try-outs. In the cold, my fingers turned white - this condition has grown to be more severe - in the slightest incidence of cold/stress - my fingers and toes will turn white/blue and go numb.]
- Shortness of Breath/Chest Pain [a year ago - I worried that I was having a heart attack or some heart complication - my EKG came back normal but my doctor knew something was not right - I was diagnosed for a short period of time with asthma that did not always improve with use of inhaled corticosteroids - turns out that a combination of Lupus and Endometriosis are the culprit]
- Fever [I chronically will get low-grade fevers without infection - I joked that I was getting early menopause until I realized that this wasn't for a 20-something year old that isn't actually going through early menopause - oops]
- Fatigue [I am sure most of my audience reading this will have watched some sort of physical altercation (a fight) at some point in their life; ever notice how tired the fighters are during and afterward? Notice how they can only fight in short bursts and need frequent breaks to rest? Well, consider me a fighter, except I'm fighting myself, so it's doubly tiring. My immune system is literally attacking the healthy tissue throughout my body, and it requires a whole lot of rest, that isn't very restorative. I've always been an overachiever, but my body has taken that notion a little too far, wouldn't you agree?]
- Skin lesions that worsen or appear with sun light [This one was recent, and the condition that solidified the diagnosis. I had never had much of a problem with sun exposure until December of 2012, when a few minutes of sun exposure left me covered in hives that turned into open wounds all over my body - ouch!]
- Joint pain [I've always chalked this up to being arthritis - but Lupus and Rheumatoid arthritis are both autoimmune diseases - thus attacking the friendly tissues in your joints and causing pain and swelling - feels great!]
- Memory Loss [Here I was thinking that I was a) getting old b) getting dumber or c) caring less about remembering anything; however, even with great effort, my memory doesn't always work the best, thank you, Lupus]
- Lastly: the "butterfly" rash [I always thought that I was just a little red in my cheeks and the bridge of my nose, but my doctor actually pointed out that it is actually a flared up rash/irritation of sorts from the SLE - mine is not as 'obvious' as some pictures I've seen on google but can be very pronounced during a flare] Pictured below:
Notice that there is more than just a "redness" to my skin; there is a patchiness where the rash is worse in areas that can often be difficult to cover up but, as you can see below, can usually be hidden with makeup.
#rashbegone!
Well, there you have the symptoms of my disease. They are kind of random, and don't seem to be very specific, but affect my life in a great way. The pain and fatigue are frequently debilitating, and every morning I don't know how I will feel upon waking up. Everyday is a wild adventure. My carefully planned life was thrown out the window long ago, there is no such thing as "calculated" or "predictable" in the life of the chronically ill. Though, as long as we are living, we triumph. I have discovered that my attitude, not my illness, is the greatest determiner of my quality of life. Just because I can not do what others may be able to, does not mean my life is worth any less.
I hope that all of you reading this will share this journey with me, sick or healthy, it's the ride of a lifetime! Now let's go enjoy it together.
Cheers!
