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

Life 2020-2021 Getting back into this.

So as the whole world has struggled with the pandemic it's an understatement as to how I have been, my kids and, my husband. I am not going to lie and say that it didn't affect me in an immense way I went down a severe hole into depression and, let's just say my mental health was a nightmare I wanted to die and, just didn't have the strength to do it myself so I would lay in bed and, starve myself hoping I wouldn't wake up the next time. The real struggle came at night because of my insomnia I would lay in my bed and, think about all the things I couldn't do or wanted but, I just didn't have the strength to, I would think about how much better my husband would have been marrying someone else how I have ruined his life how mean I was to him and didn't even think or want to be. How he is carrying on with his life and me, I'm just better off dead because that is exactly how I feel like a person suffering from all this crap. My kids don't seem t...

Let's talk showers

Let's talk showers No, not the kind that falls from the sky when it rains. No, not meteors, but regular showers people take to keep clean. A regular person is in the shower up to 5-10 mins maybe 15 at the most. Well for someone with Lupus, MS and Fibromyalgia it's so much longer. For instance, it took me almost an hour to shower the other day. Why is this you ask? Well, I can barely stand on my own, and do things like lift my hands to shampoo my hair without being so exhausted I have to sit down. So it begins, the clock ticking away. *10 mins gone * sitting down. Once I finally can I stand back up and commence the ritual of the shower but wait, after *10 more mins* I need to take a breath before I pass out (literally) it takes sitting down and breathing slowly to make it not feel like my heart is going to leap out of my chest. I look at my handy dandy Fossil smartwatch and it says my BPM is 140 which I believe. I try to slow down my breathing, a...

Smiley360 Review TOP =The Organic Project

*This post is about feminine products so if your not into that scroll on thru.* We were very lucky to try a new, organic, feminine product brand. Myself having a complete hysterectomy used the panty liners and my daughter used the rest.- The products- 1 box of 10 Ultra Thin Pads with wings 1 box of 16 cotton regular tampons No pictures didn't want to waste them for Sanitary Reasons! 1 box of 24 cotton ultra thin panty liners The Brand - TOP- which stands for -the organic project. What this company stands for is amazing. *The mission is to educate women and girls to make better choices for themselves. Better choices for our planet, and to help each other along the way. You have a choice, a voice, and the power.* With every new subscription, they donate a box of product to women in need. How awesome is that? What's great about this product is it's 100% organic cotton & biodegradable period pro...

My Not So Normal Life and A Few Other Things.

Search This Blog