Lupus thoughts and ramblings

Lupus has left me unable to walk, sit for to long, work, care for my family and be myself.

So many people say that "Lupus doesn't have them".

I wonder what it is that has me then ?

Depression, Fear, Self Loathing, Loss of Faith and NO Positivity. Are all things I fear have & slowly make the chasm in my heart bigger.

This disease sucks the positivity right out of me and I try so hard to hold it in and be positive and strong. I am just so angry sometimes..

The hardest part of this disease is watching my husband who has sacrificed so much to become a single parent of 5 kids. By this I mean he handles everything . It kills me to watch the stress eat him alive.

Today at the grocery store I was unable to stand up and collapsed right in the middle of the store. The look on his face was enough to break my heart in 2.

I know I am getting worse ,when you wake up feeling worthless and useless can't move it all sucks. Positivity is key so I try to get up each day.

I love my life truly, I am blessed with my children, my husband, and Daizie Dog .
Slowly working on my faith again, it's hard to be a Mormon in Utah I am so frustrated because I just don't agree on certain things, issues etc.

I am so excited for my son Logan who will be graduating soon. but I am scared that I won't last that long and be in so much pain that it will ruin the moment. I was able to borrow a wheel chair but unfortunately it will not fit in our vehicle in the trunk or in the back seat with someone sitting there. 😂😢Just another thing to stress about.
**** (He did graduate, I was there and the wheelchair saved my life, I was in minimal pain so I could enjoy it... ) Thank Heavens Not to say the next couple of days all I did was Sleep.

As far as my son Logan going to college this fall, out of state, makes me happy, but so sad that because of my deteriorating health I can't make the road trip to Arizona to drop him off. Never when I thought about these milestones when he was a 👶 would I have thought I wouldn't be there to drop him off.
This breaks my heart. Makes me Sad and Damn Angry. Wouldn't you be?

Some people think I am complaining and I am miserable all the time but I am not.

I don't mean to always sound so dreary and negative but it's extremely hard when this has become your day to day life. I truly believe that if the awareness was out there people would understand more.

I constantly think about how much I matter in this life. It's probably the hardest thing I deal with .

I am disabled and can't walk, Sometimes I drop things and can't use my hands , I am always sick to my stomach , the sun kills me. It touches my skin and it burns and makes me sick . I mean really what life do I have? Am I just a burden?

These Questions I ask, I know the answers but sometimes I have those days where it's all too much. of course I am okay after a day or a couple of hours . I start all over again It's all just so frustrating.... Argh..

My kids are on summer break and i wish i could do the things i see my friends doing with their kids .
This is just not possible. So I try to stay positive . It's not in my control. I did not cause this . The only thing i can do is make the best of the time i have with them .

Just venting helps sometimes and I think I am gonna end it here.
Thank you for taking the time for reading this post .

As always Stay Strong and Keep Fighting
xoxo

Misty

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My Not So Normal Life and A Few Other Things.

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