Lupus Thoughts and Ramblings -Summer

I can hear outside my windows, yelling, laughing, splashing in the pool,

 all the kids enjoying the fact there's No School.

I see Pictures everywhere on social media, new suntans, beach hair, sandals, tanks, & shorts, Pictures of  Fun Vacations, Not a single Care in the world. 

Everyone Soaking up as much sun as they can before Summer is finished.

Mayson asked me why I don't go out? why I don't want to watch them swimming? What does summer mean to me? this got me thinking. 

What does summer mean to me?
The first things to pop out of my mouth were 

 long sleeves, long pants, sunblock to the 100's, Huge hats, sometimes gloves. Sweatshirts and sweaters. 

It's long flares that last for days because I  went outside, for a quick errand without taking the things I need   causing my body aching pain everywhere,
Imagine being hit by a bus, That's Me .

 I have only one choice but to stay in bed. 

 I can't participate in family picnics on the 4th with family, aunts, and uncles.
 It's watching fireworks from my bed.

 It's constant pain from the extreme heat to the cooling A/C. 
It's stomach aches and heatstroke like symptoms, Migraines from noises that are too loud for me but normal to everyone else. Thanks to medications.

It's life inside because sometimes the symptoms of this disease are just not worth it.

Speaking of Vacations-

I was supposed to be heading to Disneyland in June   (before our free passes were up) Plus stopping to hang out with my BFF. 

 but that didn't happen because of this disease.

My heart and mind were all Disney bound
 but my joints, legs, and nerves were like

"No Way Sweetie, kiss that, ba bye.." ain't gonna happen. 
 Guess what?  They were right as usual.
When you hurt you can't ride when you can't stand in long lines, when you can't walk, it defeats the whole purpose. 
I just feel at a loss.

I am tired of being alone while everyone is out having fun. 

The funny thing is the sun feels so good at times and others its like a burning prickling sensation.

My Life starts After the sun has gone down. Hopefully, I am

 feeling good enough to  push myself a bit to go out.

* So if you see me out at this time that is why.
it's usually a movie or dinner with my husband or kids.
I can only handle a few hours out  
 Because 
 my body starts to shut down. 
I can hardly stand let alone walk without help.
The pain is so bad, I am sick to my stomache and start sweating, plus my body just starts to shut down.

I want so bad to figure out this disease and how to live through it all.

I want to have a better quality of life 
One that isn't passing me by.

Do I just do what I want?
 but know that it will be hell the next 4-5 days.
Is it worth That ?

  For me, every day gets harder.
 If it's not one thing it's the other.

 I ask myself Why?
 Why me?
  Why is it harder for me? 
Why can't I do what others can? 

Each day I am answered with the same agonizing pain, immobility and just plain exhaustion that I can't control.
I try to push myself to get out and move as much as I can but it just doesn't seem like enough.

I am trying to be positive and be grateful for what I have and what every day brings. 
 this is extremely hard for me because when I try I fail and it's just too much.

I went out with Jayedyn on Tuesday night for some much-needed girl time. 

I didn't care, I was going out no matter how I felt. 
with my makeup and hair done, looking Normal. (what's that?)
(even though it took me 3 hrs to do because I had to keep stopping and resting.) 

We decided to stop by and see if my mom wanted to get some dinner with us? 
Sadly she had eaten already so we just visited with her instead.
We talked about our current Health issues and compared bumps and rashes, family, kids, and relatives it was a nice visit. 
My mom recently got a life-changing result.
 It's not something I can talk about yet until she gives me an okay.
She needs to have surgery still and that may or may not happen.
She is happy on the outside but on the inside, she is slowly falling apart. 
 It hurts to think about my mom like that and I wish I could just take away her pain.
I wish I could visit more, help her out,  but just be with her.
This disease doesn't care about anything in your life, or what you have to do, need to do, or what you want. 
It limits my activity.  

I am going to be starting some Physical Therapy in *the pool, hopefully, I don't drown since I can't swim
No, really I hope that it helps. 
I am also going to be doing an MRI and Neurology scan to see if they can find anything that could be making it worse. 
We shall see.
I will update ya on here.

Well, I think that is all for this rant session LOL! 


Thank you for taking the time to read.
As always Stay Strong and Keep Fightin. 
XOXO, Misty

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