7 Things I want you to know about living with Lupus

Here are 12 things I want you to know about living with Lupus:

  1. Lupus can be fatal {and it almost killed me}.  Unlike many other autoimmune diseases, 15% of people diagnosed with SLE will die from complications of the disease .  The complication that almost took my life? Pulmonary emboli {blood clots in my lungs}. One minute I was watching TV with my husband, the next I was unconscious and he was calling 911. I spent almost a week in the hospital on powerful blood thinning agents to rid my lungs of the clots and will be on a blood thinner known as Coumadin for the rest of my life.  Lupus is a serious illness and more needs to be discovered about what causes it so that a cure can one day be found.
  2. There is no cure for lupus.  While there are treatments for the symptoms, there is currently no cure for this debilitating disease.  I take an anti-malarial medication called Plaquenil to keep the worst of my lupus symptoms at bay.  The anti-malarial medications decrease inflammation and interact in some scientific way to decrease the overactive immune antibodies that are attacking their host {me}.  All I know is my health has improved a lot since starting Plaquenil and I am thankful for scientists that figure out that medicines created for one purpose {fighting off malaria} can also be used to ward off the effects of another {in this case, SLE}.  When I am having a flare {a period of time where symptoms worsen significantly} I have also taken corticosteroids.  I detest the way steroids make me feel and using them long term can cause a myriad of health problems all their own but, at times, they help decrease inflammation and shorten the length of flares. Prednisone also makes me crave Dairy Queen and homicidal, just so you know.
  3. Lupus hurts.  I am in a moderate level of pain most days.  The pain is severe during a flare.  Most of my pain is in my hands and feet, although an overall achiness does accompany a flare.  I’m also prone to headaches, which is also common with lupus.  On top of that, lupus causes damage to many different organs in the body.  One area that has been affected in me is my bladder.  I have frequent UTI’s {urinary tract infections} which aren’t comfortable. I also have lupus cystitis, which is a chronic inflammation of my bladder- also uncomfortable.  I am stubborn and will not take any pain medications that affect my cognition, primarily narcotics.  Because lupus has attacked my liver in the past, I am very limited in the amount of Tylenol I can take {two 500mg tablets a week} and ibuprofen isn’t an option because I am already on blood thinners.  I use heat, ice, rest, a TENS unit, baths and more rest to treat my pain.
  4. Lupus doesn’t just affect me.  Yes, I live with chronic pain and fatigue.  Yes, I am sensitive to sunlight.  Yes, I deal with the impact of this illness on a daily basis.  But, so does my family and those that love me.  Over the past few years, my children and husband have watched me battle this illness. It has affected my mood, my ability to join in on activities I once enjoyed and with the almost dying incident, their sense of security that mom will always be there for them.  While they enjoyed getting to the front of the line at Disney World, I know they would trade those little perks to have their healthy mom back.
  5. Mainly women develop lupus.  90% of people living with lupus are female.  A large majority of those women are not Caucasian.  For some reason, this disease favors women of color {although it didn’t discriminate when it chose me}. Many women that live with lupus report worsening of their symptoms the week before their menstrual cycle.  I hope that researchers continue to focus on this link.
  6. Lupus makes me red in the face.  Literally.  I have a tell-tale sign of lupus on my face called a butterfly rash.  It is a red, raised rash across my cheeks and the bridge of my nose {and some on my forehead}.  Thankfully, make-up masks most of it but if you have ever noticed that I “look flushed” or asked me if I “got some sun”, you were likely noting my butterfly rash.
  7. Lupus is expensive.  My husband and I have written off more than $35,000 in out of pocket {meaning we wrote the checks!} worth of medical expenses since 2007 {which was the year I started having strange symptoms and searching for a diagnosis}.  I am eternally grateful for health insurance and don’t even want to imagine the state of our finances if we didn’t have medical insurance.

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