What the heck is Lupus?

I realized that I have never actually explained the disease I have and what it has done to me.   First let’s talk what my own body has done to me.  You see Lupus and RA are auto immune diseases.  To put it simply at first, my own body is trying to kill me.   Blunt I know but it has, and you will see how and why shortly.  It started with massive joint pain and extreme fatigue.  I had nothing.  No energy.  No strength.  And trust me this came out of no where, the doctors didn’t know what it was.  They thought I had the flu, they though maybe fibromalygia, pretty much everything but lupus.  Why would a perfectly healthy 21 year old have lupus.   It took a lot of convincing on my behalf, but I finally got them to do the blood tests for lupus.   Go figure they came back positive and a very strong positive on all accounts.  There are several tests and anti-bodies they look for to determine if a person has lupus.  Mine ALL came back positive, it was a relief and a nightmare in one, see my mom has lupus and I have seen what it has done to her, and I knew what I was in for, but little did I know it would be ten times worse.

Upon receiving my diagnosis, they attempted to treat the disease.  The other not so awesome thing about Lupus is that no two people’s treatment are alike.  You can’t do what worked for one and it be expected to work for another.   So started the trial and error of medicines, most of which I don’t remember the names to but definitely remember some of the side effects.  At 21 I was in college working full time, 3 jobs, and going to school.  I had a lot on my plate and didn’t want to fail.   One of the medicines and the disease itself, caused my hair to fall out.  You see the medicine I was on was basically like chemotherapy.   They were trying to kill and supress my immune system to make me healthy.  Seems counterintuitive I know, but my immune system is what was killing me.  It was producing the antibodies that were effecting everything.

And the being super sick started.  I was constantly sick, college students don’t care if they are sick and go to class.   And then in turn I would catch whatever they had and take it a whole new level because my body had NOTHING to fight against the common cold or the flu.   I remember a specific time being super sick, trying to stay awake in class and my good friend Gary and Zeb, told me I looked like the walking dead. I was, I was barely able to do everything I needed to do.  But you see I was even stubborn back then, I wasn’t going to let this get me or smash my dreams of becoming an engineer.  I made it through college and got my first job as a design engineer.  My dreams came true!  I was going to be able to design who knows what but something awesome and I was beyond excited!

Then the lupus took a toll.  It hit hard and I was sick very sick.  I had 3-4 blood clots, some of them pulmonary embolisms.   Scary stuff considering I knew what they could have potentially done to me if they weren’t caught.   My gall bladder almost exploded and I was rushed to the hospital from work, for emergency surgery.   My retina detached and had to have emergency surgery to reattach it.  I was sick, and my body wasn’t recovering.   It was a constant battle to stay awake, I had literally nothing left in me, I was so sick.    My doctor gave me a handicapped placard, because walking 5 feet was killing me.   I wasn’t able to walk to the store to get groceries, it was bad and embarrassing for me.  I hate being seen as a weak individual.

I made a decision to find another design job, whether it be in Denver or Colorado Springs, where I was currently living.  I got hired at the company I have been at for 4 years now.  It was the best move I could have made.  I met some great people and one of my co workers convinced me that I need to do this thing called Tough Mudder.  My little brother ran with me and I have told this story many times.  It was the hardest thing I had ever done, I had struggled through it but finished and crossed the finish line.   I was in tears I had done it but I wanted more, I wanted to be able to run it and not feel like death afterwards.

I started training, working out, and by some odd occurrence I started feeling a million times better.  Yes I hurt.  Yes my body wanted me to quit but I didn’t.  I didn’t and wasn’t going to give up because I stopped getting sick, I stopped going to the hospital all the time.  Great things were happening.   In this process I made the choice to change my diet.  A friend had encouraged me to look into Paleo.  I changed to this cold turkey.  Cleaned out my cupboards and got rid of the crap.  Well wouldn’t you know it worked I was able to run 25+ races in a year and was happy and healthy again.

I was loving life, yes I have set backs every once in awhile but I am so much healthier than I was before.  I am happy again.  I run races and push my self and am truly amazed at what I am capable of.  I never pictured my self here.  Funny how God has a plan for you and you don’t even know it, he is a smart man.

Now to fully explain what the heck lupus is.   I am borrowing this from lupus.org where it fully explains what this is.  What I have.

Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years.

In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues (“auto” means “self”) and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.

Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better).

These are some additional facts about lupus that you should know:

  • Lupus is not contagious, not even through sexual contact. You cannot “catch” lupus from someone or “give” lupus to someone.
  • Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease, as described above.
  • Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.
  • Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.
  • Our research estimates that at least 1.5 million Americans have lupus. The actual number may be higher; however, there have been no large-scale studies to show the actual number of people in the U.S. living with lupus.
  • More than 16,000 new cases of lupus are reported annually across the country.
  • It is believed that 5 million people throughout the world have a form of lupus.
  • Lupus strikes mostly women of childbearing age (15-44). However, men, children, and teenagers develop lupus, too. Most people will develop lupus between the ages of 15-44.
  • Women of color are two to three times more likely to develop lupus than Caucasians.
  • People of all races and ethnic groups can develop lupus.

Its a disease that is out to get your body basically, and isn’t going to give up.

The mayo clinic states the following “Lupus can be difficult to diagnose because its signs and symptoms often mimic those of other ailments. The most distinctive sign of lupus — a facial rash that resembles the wings of a butterfly unfolding across both cheeks — occurs in many but not all cases of lupus.

Some people are born with a tendency toward developing lupus, which may be triggered by infections, certain drugs or even sunlight. While there’s no cure for lupus, treatments can help control symptoms. “

No cure for lupus no.  Little research done to find a cure yes.  This is why I am so adamant about sharing my story and donating to research.  You see the medicine wasn’t working for me, and I was tired of being the crash test dummy for finding something that works.  I took matters into my own hand and found something that did work.  That was natural and AWESOME.

I truly hope this helps those who read my page understand.  You see not only do I have lupus but I have rheumatoid arthritis as well.  Both debilitating diseases.  The arthritis foundation defines it as:

Rheumatoid arthritis, or RA, is a form of inflammatory arthritis and an autoimmune disease. For reasons no one fully understands, in rheumatoid arthritis, the immune system – which is designed to protect our health by attacking foreign cells such as viruses and bacteria – instead attacks the body’s own tissues, specifically the synovium, a thin membrane that lines the joints. As a result of the attack, fluid builds up in the joints, causing pain in the joints and inflammation that’s systemic – meaning it can occur throughout the body.

Rheumatoid arthritis is a chronic disease, meaning it can’t be cured. Most people with RA experience intermittent bouts of intense disease activity, called flares.  In some people the disease is continuously active and gets worse over time. Others enjoy long periods of remission  – no disease activity or symptoms at all. Evidence shows that early diagnosis and aggressive treatment to put the disease into remission is the best means of avoiding joint destruction, organ damage and disability.

 

Once again not curable so I have a double punch going against.  My immune system REALLY hates me.

My immune system is suppressed yes.  This is why I get upset when coworkers come to work sick and why I have cleaning wipes at my desk and clean religiously.  I have to.  I want to stay healthy and not be sick anymore.

The most recent blood tests show I am on my way to remission, which is a blessing.  I am being taken off the medicines that I have been on for years.   I am almost back to normal.

I am doing another craziness on Saturday, a 12 hour endurance ruck.  This will be the craziest thing I have done, but will succeed.  I will not quit.

 

Don’t quit. Never give up trying to build the world you can see, even if others can’t see it. Listen to your drum and your drum only. It’s the one that makes the sweetest sound.

Read more at http://www.brainyquote.com/quotes/keywords/never_give_up.html#Gxd75vpQife64RJG.99

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