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!
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.
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.
(The best way to let people know how I feel is the scene from Twilight- Breaking Dawn)
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.
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"
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?
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?
I am a disability, I am disabled.
I am more disabled than someone who gets migraines and is approved. (BTW I get those)
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.
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 Only worth it "
In the end, I believe that this is preparing me for something but just don't know what yet.
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.)
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