Skip to main content

Lupus thoughts and Ramblings June 25th




Hey there.
 I hope you are staying safe and sane in this crazy world. 
It's a lot to stomach for anyone. I can't go crazy. 
I already am!       
demotivational-poster-n3z5ed8z4i-GOING-CRAZY | The Unrefined Pantry

Serious question?

When do you tell your family that their joking around has become hurtful? 

It's to the point where I feel like I am in high school again, trying to compete for their love and attention.

I am 45 yrs old and feel like I am treated like a child at times.

I am told that I am too sensitive and that I take things out of context, that I should just take it, and know they are playing.

 Every night it's a roast the hell outta mom till she cries or locks herself in the bathroom so no one would see. 
That awkward moment when your daughter roasts you and leaves burns ...
it's not like anyone would care to be honest. 
I could cry for hours and no one would even flinch. 


When did I become invisible, and so small that it doesn't matter if I am even around? 

I am ignored when I am trying to be a mother, I am ignored when I try to let people know how I feel.
I am beyond frustrated. 

I have been sitting on my bedroom floor crying for about 15 mins and my husband snores away not even a care in the world. 
 (he did just get home from softball umpiring and a long day at work to be fair, but still)

 It's just one of those days where I feel so broken, so useless, and have absolutely no purpose in this life. I have been having those kinds of days a lot lately and I hate them.  

I know that I am more emotional because of this disease, but to be honest you would be also if you couldn't walk/ move and even stand on your own 
Plus then throw in half of the pain. 
You would understand how  I feel. 
Pin by Patty Seljestad on My Causes | Lupus quotes, Lupus facts, Lupus
(The best way to let people know how I feel is the scene from Twilight- Breaking Dawn)
Breaking Dawn Part 1 - Born Renesmee - YouTube
 Bella is all doped up on morphine, after giving birth and she can't move, but Edwards vamp blood is coursing through her body killing off each cell, each organ as she is screaming inside.
 That is me, except "I can feel everything." 



I don't cry out anymore. I hold it all in, and maybe that's my issue? maybe I should just cry or scream out like a child. 
Adults throwing temper tantrums just isn't sext. | Best quotes ...


 But the fact of the matter is nothing is going to make me feel better, no one and if they do all they can say is sorry (that's all I get) 

It has been years from receiving this diagnosis, and I still try to be optimistic about it every day, but I think it's beating me down, even more, doing that. 

I hate that this has become my life now.

What I try to do doesn't help. I am ready for anything to be somewhat normal every day, and it never happens.  Anyone else? 

May was Lupus awareness month

 and the theme you would say was 
"Let's Make Lupus Visible"
Lupus Foundation of America - Publications | Facebook

Why since I have Lupus do "I feel INVISIBLE"? 

Why am I screaming out for help for support, and understanding, and humility, and I'm not seen?

living with lupus | Lupus quotes, Lupus awareness quotes, Lupus ...
Get this-
I applied  for disability 2x's and was denied 
Reason-
*My condition results in some limitations in your ability to perform work.
*not severe enough to keep me from working
*not sufficient vocational information to determine whether you can perform any of your past relevant work, however, you can adjust to other work.
* not enough information about this disease is known. 


WTHell! I have told you what I can't do and my Drs are backing me up but some person who is not even a Dr or in the health field can tell me my symptoms and disease isn't a disability? 

Not All Disabilities Are Visible
I am a disability, I am disabled. 
I am more disabled than someone who gets migraines and is approved. (BTW I get those) 
Not every disability is visible – 'Invisible disabilities ...
I hate feeling this way but it's the truth.

It's all so frustrating we need more action to figure out the cause of this horrible thing called lupus.
I am so over it all. 

Pin on Lupus
I know my family loves me and I know that they are only playing because -that I have found is their coping mechanism for my family and their friends that is just how they are other than that they are the most well-mannered kiddos and mostly polite.

I know that this is taking a toll on them as well and they are trying to handle it all their own way it's so hard for them to see their mother like this. I know 
NO ONE wishes that on their parents. 

I feel so alone sometimes like no one truly understands me or how I feel.  This disease is just slowly ripping Me apart little by little, day by day and there's nothing I can truly do, or a magic pill to make it go away.  
I know that God only gives us what we can handle, but this is just all too much for me. 
Yet still every day I get up and fight again. 

I'll count this as one of those bad days, and move on maybe tomorrow will be a better day for me.

I know that I am not alone in this fight and so many of you spoonies are feeling the same way, and I am so sorry. 
This is something nobody ever should feel it's not fair, but please hang in there.
 You are loved by me and so many others.
 I Never Said It Would Be Easy, I Only Said It Would Be Worth It ...
" I never said it would be easy Only worth it "  
In the end, I believe that this is preparing me for something but just don't know what yet.
Lupus Quotes - Bing Images | Health | Pinterest | Lupus Quotes ...
Thanks for taking the time to read. 
Reach out to me if you need to talk 
(I also need to follow my own advice)
 
     As Always Stay Strong And Keep Fighting,
         XO, Misty

(Sorry if my punctuation is off or wrong just know it's not on purpose.)
Lupus Quotes Gifts on Zazzle



Comments

Popular posts from this blog

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...