Beckie's Story

Hello, my name is Beckie.  I am 28 years old, diagnosed with Systemic Lupus at the age of 21 and this is my story.

 

I'll never forget the morning I woke up to loss of circulation and throbbing pain in my foot.  My entire calf was swollen, hard as a rock.  I sat there racking my brain, trying to remember what I'd done the day before to cause such an injury.  I got ready and went to work as usual, limping as I walked, trying to ignore the pain and just assuming I'd somehow pulled a muscle.  I think I walked around on it for about a week before I finally decided to make a visit to the doctor.  One quick look and my doctor wanted to run an ultrasound to rule out a blood clot.  I almost declined, assuming there was no possible way I could have a blood clot.  I wasn't on birth control, nor did I smoke.  Up until then, I'd never really had any major health problems.  My father happened to be there with me and he said "we'll do the test".  The next morning, I was taken in for the test and it was confirmed.  I had a DVT in my left leg.  This was the beginning of my long journey and the first of several more clots to come.  

 

We started the "testing process".  The fun stuff, lots and lots of blood work to find the underlying cause of my blood clot.  After an extensive symptom checklist and the results of my blood work, I was finally diagnosed with Systemic Lupus Erythematosus in February of 2000.  I have what are called "Lupus anticoagulants".  These are antibodies that work against phospholipids (a group of substances in cell membranes), which inhibit blood clotting in a test tube, but may be associated with a higher risk of clotting in people who have them in their blood.  Just 1/3 of lupus patients have this, unfortunately, I am one of them. 

 

Upon hearing my diagnosis, I was confused and scared.  I had no idea what Lupus was.  The only things that stuck in my memory were "no cure" and "fatal".  Although, I was somewhat relieved to have a diagnosis.  Everything seemed to make sense then.  I'd spent years just struggling to get out of bed.  In high school, I wanted to participate in sports or other extracurricular activities so badly, but I was exhausted or in pain.  I never really thought anything of it.  I just assumed this was "normal" or I was just lazy.  My diagnosis came at a good time.  It wasn't long before I began to suffer many "Lupus flare-ups". 

 

I can't tell you how many times I've been in the hospital or the ER just because of Lupus complications.  There are times my platelets become so dangerously low that I have to be admitted to the hospital for emergency transfusions.  I've had numerous treatments just to manage my Lupus.  Just to name a few:  Plasmapheresis (a process that removes my plasma and replaces it with fresh frozen plasma), cyclophosphamide (a chemo drug-having my body blasted with extremely high doses in hopes to wipe out my immune system and allow my body to reprogram itself to function normally), steroids (used for basically everything in Lupus it seems-all I know is that it makes me fat).

 

Living with Lupus is a daily struggle.  Most people think that those with Lupus may not "look" sick, but we are.  It's a daily feeling of having the flu.  Feeling like I have the flu is normal to me.  Just making it through the day with only one ailment is a good day for me.  It's hard to go through each day feeling what I feel and not wanting to tell anyone.  Not wanting to tell anyone because I just want to avoid all the questions.  I don't want people to think "there is always something wrong with her".  The truth is, they are right.  There is always something wrong with me, but I have learned to live with it.  It has become my normalcy.  It doesn't only cause physical pain, but emotional pain as well.  It's frustrating to feel what I feel and have no one understand.  The stress of being a burden on your friends and family.  I won't even mention the endless medical bills! 

 

I could write an entire book about my 7 year struggle with Lupus.  When I was first diagnosed, I was told that the odds used to be 50-50, meaning that you'd die within 5 years of diagnosis.  Today there are more tests, better treatments, and a larger percent chance that Lupus will not shorten my life-span!  I have made it this far and I will continue!!  I may feel like crap and my bad days may be pretty bad, but I will not succumb to this.