05 May, 2015

"Awareness" Day

May is National Lupus Awareness Month and May 15th is National Lupus Awareness Day.



I have Lupus.

I want to share to inform people.
Last year at this time, I barely knew what Lupus was, let alone knew that it had an awareness day.
I had heard of the disease before, but had no idea what it really was.
When I received my diagnosis last summer, we were shocked, but I was simply amazed as I read up about it. It was SO nice to have an explanation for how I was feeling and so thankful that it wasn't all in my head.

What is Lupus?: 
 
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).     Source

 My story: 

Two years ago when we moved to the PNW, I started feeling achy, severely fatigued and ill all of the time. At first, I just chalked it up the major life change we had just been through and all of the stress our family was under during that time. I just didn't understand why I had no energy and why I seemed to be getting sick constantly. I swept it under the rug though and continued to tell myself it was just stress.
As most of you know, in August of 2013, my arch collapsed in my left foot causing major swelling, (at the time we didn't know what happened,) and I began to experience severe nerve pain throughout my left leg, along with other symptoms. After months of seeing specialists and taking different medications, we finally got the swelling down.

At this point, I blamed the problems in my leg and foot as the cause of how I started feeling after we had moved. I began again to tell myself that I would feel better when I adjusted. And I continued to tell myself that it was all in my head.
Months later I was feeling absolutely horrible, and there were many mornings when getting out of bed brought me to tears. I knew I had to get in to see my doctor, but I won't lie, I put it off because my worst fear was being told that nothing was wrong and that I just needed to suck it up.

Ironically, a few days before I went in for testing, we were discussing with a relative about what my dr was going to test me for and I mentioned lupus as one of the things. Thinking that lupus was only a skin disorder, he quickly looked at me and replied, "oh you don't have lupus, your skin is fine." I shrugged and said ok.
I had no idea what it was either.
So as you can see, when we got the results back, we were quite surprised. 

I had Lupus and my #'s were through the roof.

Today:


I have good days and bad days.


I take as little of my meds as possible because they are also bad for my body. That way I can double up when I'm feeling worse.
I have cut out all red meat and alcohol, (both of which are big inflammation triggers.)
So far my major organs are still in good condition. 

Severe joint pain, nerve pain and fatigue are my biggest problems.
On most days, I accept what God has challenged me with, but there are days where I struggle.
I am not afraid of dying, as I know where I am going, but I fear leaving my children and husband. I also fear leaving them with medical bills if it's a long drawn out and painful process.
During one of my toughest days, my son said that he didn't want to have a sick mom anymore and that really hurt.

Having a disease that effects the insides of my body means that a lot of people, even some friends and family, don't understand when I still "look" perfectly fine and they think it's all in my head.
 

So this is life as I know it now.

And even though I know there are thousands of diseases out there, and everyone has their own story, today I wanted to share with you about mine.

If you want to know even more about lupus, here are a couple of links: 


Lupus. org
Lupus Wiki page

Please feel free to email me if you have any more questions.