~ MY STORY ~ For those who give one. :)

Someone said something to me that frankly ticked me off. :)))) I know. Unusual and rare. :))))

So. I decided to tell you all about what it is like to have an autoimmune disease. Mine? Lupus.

There are some holes in the story.

Let me fill them in for ya.

I have edometriosis. I have had several extensive surgeries to remove cysts and growths on my ovaries and abdominal cavity.

I have had my gall bladder removed. I have had my adrenal glands burst. I have had ulcers. I have asthma. I have had pneumonia more times than I can even count. I have had bizarre rashes and skin issues. I have had migraines and a couple seizures and my neck has been locked into a beyond excruciating place for about 15 years.

I was diagnosed with Lupus and I told them to stick it. I didn't buy it. I just have endometriosis and they are full of it.

I was wrong. I have Lupus.

Straight up.

After my third child was born. My beautiful daughter Lily Anna. My left adrenal gland hemoraged. I was admitted to the hospital 2 days after she was born. I went home. Then the adrenal gland on my right side burst. I went back to the hospital for 4 days.

It was the single worst experience of my life to have my long awaited for newborn baby girl away from me when my milk came in for her. I was so freaked out to have her at the hospital I sent her home with her dad and stayed at the hospital alone.

It was agony.

I now have daily issues with pain in my feet, ankles, hips, shoulders, neck, arm, elbow, wrist and fingers. EVERY joint in my body is incredibly painful. I'm freaking EXHAUSTED all the time and I don't sleep much. I cope okay. I muster up a bunch of grit and I do the most important things first. One of which includes 2 jobs and repeat request to do public speaking.

The family management stuff. All of it.

If I had a shred of energy left I do a bit of writing and go walking or jogging.

That is my story right now.

The latest is a sinus infection. Which I have about 6 times a year. (except in CA i did not) which will turn into pneumonia, which will turn into intense antibiotics, which in turn will shred my guts and give me stomach GI problems and a fierce yeast infection.

Its a riotious amount of fun.

This time, I was at the doctors office and they gave me a flu shot and my body WACKED out. I itched ALL over for 2 days. Did not sleep and then became every bit as sick as I would if I had the flu. The week of Christmas was spent in bed 24/7.

I get pleuritis ( swelling of the lining of the lungs ), and pericarditus ( swelling of the lining of the heart ) on repeat. repeat. repeat. repeat. repeat. repeat... Which both feel like someone is stabbing you in the chest or like something heavy is sitting on you.

EVERY single time I get either food poisening or the stomach flu I end up in the hospital on an IV. I literally begin retching every 10/15 minutes and it does not stop. It is agonizing and I become completely dehydrated.

I am just now surfacing from the last big flare up....

b.a.r.e.l.y.

I did not tell anyone in WA that I had Lupus for about 7 years. I kept it a secret. I did not want people to judge me based on it. I wanted to fulfill callings in my church and be available without someone feeling sorry for me.

An example? I was the ward activity chairman (when they still existed). I would put together an event and execute it. I would LITERALLY fall apart at the end and it would take me at LEAST week to get over it if not more.

I keep saying yes, because it is what I WANT. I want to live and be engaged and at church I want to give 100% every single time I possibly can.

That is my story.

I had a significant remission 2 times. The first was in Portland and I ran my first 10k. The next was after the stress of moving to WA eased up and after a few years I ran a Ragnar Relay race. 15 miles in 2 days. I am sure I will have another one soon. Stress needs to take a hike for a significant amount of time to give me a shot.

Soooooo. My first born baby will be in the middle of the ocean for 2 years serving a mission and I'm an anxiety case, so I'm thinking it might be a while :)

I deal. I hope. I ask for help from my husband and kids and just freaking keep it together as best I can.

What people do not see is the pain.

I have a wicked beautiful smile. :)))))))))))))))))))) What? I do.

People often ask me this question, "How are you so happy all the time? You always seems so cheerful and filled with light."

Funny.

I'm a giant HOT MESS all.....the.......time...... and people ALWAYS say that...

Its true though.

Here is why.

I get it. I understand what is important. I am literally FORCED to humble myself in the face of priorities that will take me away from my center of clear function... I CANNOT get full of myself or be miserable for what I do not have when all I want is to be well enough to make a sandwich for Carter or feel good enough to talk late into the night with Adam or play little pet shops with my Lily.

I am immeasurably blessed by my ill health.

It sucks, sometimes I feel picked on, but I know more than most people of what it means to actually SUFFER and when some inconvenience comes along, I see it as just exactly that... Inconvenient. Annoying but not a deal breaker.... A deal breaker is coming home from New Zealand from my mission to have surgery.

Not raising teens, or driving carpool or my laundry.

That stuff is a pain. But, not really.

If you are always in pain. EVERYTHING is a pain and you are so freaking beat down adding one more thing is just not that big of a deal.

Soooooooo. Don't pity me. NOT THE PURPOSE of the "Lupus" week. I don't do pity. I do "suck it the freak up". Pity is not for me. However, I do want those in my life to do the math when they ask me for stuff.

But, if you do love someone who struggles, maybe you will consider their lack of attention to your relationship or your 'parties' inoffensive by definition from now on.

That "Spoon Theory" is extremely accurate. http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

When they are gone, they are gone and that is very literally IT. There is nothing left. So be wise in asking for them and respect it if your loved one says no. Its not a personal assault. Its a desperate measure for them to make it to the next day.

Fact. God gives me more 'spoons' than I have everyday and my faith in his plan for me is the ONLY thing that gives me the courage to keep squaring my shoulders and pressing forward every moment of every day. Its Him, not Me. Every dang time.

True,

Debi