What It All Means

Since there isn’t much information out there about lupus (which in some small way I hope to change) I get asked a lot about what it all entails.  First off, like many other illnesses, it doesn’t affect two people the same way.  Some, like me, have milder forms while others have more severe, life-threatening forms.  The scary part is a person can go from mild to severe very quickly with no warning at all.  Those of you who have lupus know what I am talking about.  Day to day life can be a rollercoaster ride at times – going from feeling great to awful and back to a bit better than awful all within a span of 24 hours.  It can be frustrating not only for a person with lupus but for their families as well.  As any person with lupus will tell you, stress is the ultimate trigger for a flare up.  I don’t know how many times my doctor has told me that I need to learn how to control my stress levels.  Typically I give him the head nod and agree but really, it’s almost impossible to do!  Stress is a part of life – both the good and the bad – but it’s a work in progress to say the least.  What I have learned is the ability to say “NO!” and not feel bad about it – I just can’t be everywhere and do things like I used to.  Initially this was very difficult and there are times when I feel left out or disappointed.  This is one of the things that is difficult to explain and for people to understand.  When I say I’m tired – its not your average tired because “I only got five hours of sleep” its knock you down, not wanting to get out of bed, could sleep for days without waking exhaustion (I could go on but I don’t want to bore you…)  - but I digress…

Since I’m speaking of my experience I can only share what has happened to me but I hope that as time goes on, I learn of other people experiences – it’s always nice to know that you are not alone.  After my diagnosis, I began to research and learn everything I could.  A great resource for me was http://www.lupus.org/ in addition to various journals, reviews and informational packets.  It’s usually where I refer people first to get some basic information.  To save you a trip, I’ll explain it how it was explained to me…  In a healthy immune system, antibodies are released to protect your body against foreign invaders (i.e. viruses, bacteria, etc.).  However, in lupus, a person’s immune system cannot tell the difference between foreign invaders and healthy tissues so it creates autoantibodies (auto means “self”) that actually attack the body’s healthy tissues.  These autoantibodies cause pain, inflammation and damage to various parts of the body (heart, lungs, kidneys, blood, joints).  Lupus is also a condition of “flares” (bad) and remission (good) – as I stated before, it affects no two people the same and the length of a flare or remission can never be measured and is probably different every time. 

The two things that I found most difficult upon my diagnosis was 1) how did I get it? and 2) that there is no cure.    There really isn’t a lot of information out there when it comes to the causes of lupus but information suggests that genes, environment and hormones play a role.  While no one in my family has lupus, there are some that have different autoimmune conditions which could’ve been a contributing factor.  My doctors believe that over time I had developed lupus and an extremely stressful event brought on a flare (which made it very easy to diagnose).  To keep my condition under control, I take two Plaquenil a day and a baby aspirin and a Flintstone vitamin.  The baby aspirin (orange flavored AND chewable J) is to prevent blood clots and Plaquenil is an antimalarial drug that helps reduce inflammation and prevent flares.  I was recently taking Lyrica for my nerve pain but it was deemed unsuccessful and I was taken off of it (Thank goodness because it made me eat EVERYTHING in sight).  For the time being my nerve pain is pretty dominant but I just take it day by day. 

So my regimen is pretty simple compared to others and for that I’m truly grateful.  As I mentioned above there is NO cure for lupus, not even any preventative measures one can take to not get it (i.e. smoking, diet,).  That’s frustrating – with other conditions, there are screening exams or even blood tests to know if you carry a gene or have a growth.  Heck, there isn’t even one definitive test that can diagnose lupus!  These are all things a lot of people (including me) hope will change with new advances in research and funding – I mean it took over 50 years for the FDA to approve a drug specifically to treat lupus.  But its progress and I’ll take that any day over no progress at all. 

Until next time…