But you don't look sick...

It's finally time for a Public Service Announcement about LUPUS...

My Story

I've heard it time and time again... "But you look okay" and "you sure don't look sick so you must be feeling good." It's a good thing I don't like look I feel some days!! Other people think that pain is all in your head. Sometimes they just don't know what to say and think you're exaggerating. Some people think that since a week has passed you're feeling better and are pain-free just like they would be. Minimizing the seriousness of the pain will just make it magically disappear, right? You obviously haven't experienced lupus!

It all started in 1992 when I had mono my first year of college. It seemed like I was never able to get rid of it. The unexplained pains and aching, mystery symptoms, the extreme fatigue... I would sleep the day away if I could! Then the extreme joint pain set in and I struggled most of my college career, especially during the winter. Maybe it's stress, or depression the doctors would say. Blood tests were off the charts. The clinic visits became more frequent, yet nobody could figure out what was wrong. How frustrating! Why would I make myself feel like this? They even sent me to a cancer clinic with no avail.

After our son was born the pain increased even more and after a few years I felt like I could hardly walk. Just waking up was a chore. Work was frustrating; trying to stay focused and make the pain go away. I also feel like I missed out on a few great years when our son was a baby because I was so damn tired all I wanted to do was sleep! Yet I couldn't because everything hurt!

After a very thorough examination by my new primary physician (whom my husband finally told me to go to), she referred me to a rheumatologist to see if I maybe had rheumatoid arthritis, or possibly lupus. How frightening, yet somebody finally believes there is something wrong with me! I was finally diagnosed in 2000 with SLE (Systemic Lupus Erythematosus) after battling the symptoms for what seemed like an eternity. It was determined that I also have Connective Tissue Disease along with Fibromyalgia. The positive thing is that with medication most people (like myself) with lupus can live a normal life. Unfortunately every cold, flu, or virus that rolls around I always seem to catch. That's the other bad thing about having an impaired immune system.

I've been lucky and have only dealt with a few bad flare-ups since being diagnosed. Unfortunately, I'm in the beginning stages of one again right now. This time my diaphragm is involved and has been causing shortness of breath along with spleen enlargement, low-grade fevers, pain and fatigue. Every day seems to bring on a new mysterious symptom setting me in a "Google-Frenzy" trying to figure out what is going on. So far, believe it or not, this has been a little easier to handle than the extreme joint pain I've experienced in the past. That still doesn't make it any fun, in fact I'm dreading having to go back and forth to specialists. Hopefully, I'll find out at my next appointment on Thursday what our plan of attack will be. The good thing is these doctors are specialized with the organs involved and can hopefully help lessen the flare. I've heard this a million times from family members, too, but always make sure you return to your doctor for your yearly (or however often they request) tests... even if you feel okay! Ladies, this includes the dreaded woman-parts doctor as well. Whether you have lupus or not, you need to take care of yourself. The annoying tests they run also serve as a great reference point if something goes wrong later on.

One of the ways I've found relief is through the love and support of my family & friends. Sometimes just having someone listen to the crap my body goes through helps soothe my soul a little. Occasionally I'm crabby because I'm in excruciating pain for days. They are the ones that know and understand that I'm not feeling quite right and don't hold judgment against me or think that I'm just being lazy or bitchy on purpose. Most importantly, I can't let lupus run my life! I still need to be involved with the things I enjoy, just maybe on a lesser level. I occasionally need to be reminded when it's time to kick it down a notch and take care of myself.

My story is very similar to that of many other people with lupus. Unfortunately, some patients have a more severe struggle and acquire irreversible damage. I can consider myself very lucky so far.

Enough already. So what is Lupus?

Lupus is a chronic (long-lasting) autoimmune disease in which the immune system becomes overactive and starts attacking normal tissue. This results in inflammation, which in turn brings on the symptoms. The disease can affect various parts of the body including the skin, joints, heart, lungs, blood, kidneys and brain.

Normally the body's immune system helps protect the body against viruses, bacteria, and other foreign materials. In an autoimmune disorder like lupus, the body cannot tell the difference between foreign substances and its own cells and tissues. The immune system then makes antibodies directed against itself causing inflammation, pain and damage in various parts of the body.

The Lupus Foundation of America (LFA) estimates 1.5 - 2 million Americans have a form of lupus, but the actual number may be higher since many cases go undiagnosed. More than 90% of people with lupus are women. Symptoms occur most often when women are in their childbearing years, between the ages of 15 and 45. There is no single diagnostic test for lupus. Diagnosis is quicker than it was 20 years ago, yet some doctors need to be more aware of this debilitating disease as it frequently gets overlooked. When lupus is in the early stages, it takes a while to diagnose since the disease develops slowly and builds over time.

Think you or someone you know might have lupus?

Some of the main symptoms include:

  • Achy or swollen joints
  • Low-grade fever
  • Unexplained, prolonged extreme fatigue
  • Skin rashes, including a butterfly shaped rash across the cheeks and nose
  • Pain in the chest on deep breathing
  • Anemia or other hematological disorder
  • Excessive protein in the urine (renal disorder)
  • Sensitivity to sun or ultraviolet light
  • Hair loss
  • Abnormal blood clotting problems
  • Fingers turning white and/or blue in the cold
  • Seizures
  • Mouth or nose ulcers lasting longer than two weeks
Most people with lupus do not experience all of the symptoms above, but it can serve as a guide for diagnosis, or to signal a flare. Note: Many other diseases can mimic lupus, so having one or a few of those symptoms does not necessarily mean you have lupus. Only a doctor and many, many blood tests will determine the diagnosis!

Someone you know has lupus. Help spread awareness and together we can fight for a cure!

Learn more about lupus here:


Joe said...

I hope you feel better soon! That's great that you did this post though. Not only will it hopefully help people understand what you're going through, but maybe someone else who isn't feeling well recognize some of those symptoms and get help.

Matt said...

My ex wife didn't have lupus, but was diagnosed with Epstein's Barr Virus. EBV has similar symptoms, though not the chronic pain you spoke about. It made her very tired, unable to concentrate, difficult to work, etc.

It's been 12 years and I can still hear it in her voice when I call to talk to my son if her EBV is acting up. It's one of those unseen things that people have a hard time getting their head around. It's good that you have supportive friends and family. While I always "believed" her and supported her, some of her family didnt.

thanks for the post!
-Matt mmWine

DailyRX said...

Thank you so much for posting this. I suffer from fibro. and it is so hard for some people to understand. Heck, I don't even understand the way I feel sometimes.

"but you don't look sick"

I can totally relate....