Lupus and me Random thoughts

Why ? 
 That is always on my mind . This is the hardest question to answer but I will try my best.
A Normal day for someone with Lupus 
(My Story)
Wake up is normally very hard for me in the morning, no matter what time .
Being nauseous, In pain,I deal with
 my body being super stiff and sore usually at this point I am waking up from only  a few hours of sleep.

I hurt more at night and Its hard for me to sleep. I am usually fighting the pain till 3 am( if I am lucky) most of the time it's 5 a.m and i just end up staying awake to get my kids off to school.
Why does it hurt so much more at night?
I am no longer able to sleep without medication .
Eating Food Sucks i have sores inside my mouth and on my gums which make eating hard.
I try to drink water and eat something so that I can take my Medications 
(which now is up to 8 pills ) After I take my medication I am sick to my stomach  sometimes I lay back down till i  feel a bit better. That is difficult because most of the day
I end up being sick to my stomach 
This is usually how i feel for a few hours . Sleeping is really the only thing i can do throughout the day . I miss out on everything.

Lupus is taking my life away , and no one knows why or how or even what to do to help it? 

Not even the Doctors. 
It is not something that is curable, and so many die everyday silently .
Why does Lupus Make it hard for us to live Normal Or even  a semi normal life.

Things that should come natural are more difficult for me Who am I kidding ! Extremely difficult for Me. 

My ability to be a woman ,to share intimacy with the man I adore and love is harder than it should be. 
The depression i feel is getting  harder to deal with esp. at night when I am in pain and can't sleep.
(Up alone with my thoughts and Demon's, that in itself is a fight . 
Will I make it to the next day ?
This disease has taken away my ability to sit, stand or walk for longer than 15 mins without getting nauseous, sweating and dizzy . What's the point?
I was trying to do the dishes yesterday and couldn't. I probably washed 4 bowls and had to sit down .
Cleaning  my house with ease.
 What is that ? Most of the time I sit and work in sections but am fatigued after a bit and have to stop . 
Cry and scream a bit more and try again . (Just to do it all over again)
 I can't work a  full time or even part time  job to  be able to help financially support my family. These Are not things I am able to do. Not because I choose but because i am physically ill.
To never  know how I feel the next day KILLS me inside .
I can never plan anything. 

As far as feeling like a woman. it's hard to even try to be intimate when your spouse knows you are in pain , wont do anything to add to it . 

So all  you can wish for is gentle hugs , hand holding and  tender kisses , cuddling with his arm around you at night,  until you have so much pain you have  to let it down because it hurts to much .

The torture of everyone  watching me be sick everyday, passing up food for sleep, and holding my hair back as a retch uncontrollably for hours can be too much . They all continue to help me no matter what needs to be done 
 I need helpto pull my hair out of a 4 day old messy bun, brushing my hair because i drop my  brush  at least 5 times .
The phantom fevers I get for no reason  Feelin like i have the flu.
Why?
Feeling great  for a few minutes until my  pain hits so hard I can only  rock  myself and cry uncontrollably 
Why ?
Not being able to enjoy the summer weather and sun Why?
The sunlight makes me Exhausted and sick . I try so hard to breathe and just let it go but  sometimes  it's easier to stay inside . If I have to go outside it's only at night .
I pay the next few days after watching my son play football.
The fact that the symptoms are a sudden onset, at any time, makes it hard to plan anything or do anything. 

Because I don't need  to feel like i am letting someone down. Add that  to the worries I  already have . I would be more depressed.
Staying in my room 
Most nights,
 I don't see my husband until he is ready for bed .  I hate the feeling off being the monster upstairs if it wasn't for Daizie my dog  and my Kids at time I don't think i would see anyone .
Thats enough to quit right there. 

I hate this all and just want it to end most days .

I worry about how this is affecting everyone else and always worry that it's too much for them to all handle . But they keep rolling with the punches and pushing me more each day .. To which i am extremely grateful.

Lupus is a Invisible Disease and we need more  educating the world on it. At least so the negativity , rude comments and stupidity of people will end hopefully . For instance these two experiences happened recently ...

No two handicaps/disabilities  are the same. Right?

*This happened recently to another Lupus warrior *

She was at a Wal-mart and parked her car  put up her handi-capped plaquer in the window and walked into the store. When she came out there was a note on her car basically   saying that you are not handicapped , shame on you for parking there .

 people like her use the system and so on . The way i feel .

If you have a handicap sign then park there.   

I am sorry but they just don't give them out to anyone ! 

You have one for a reason and who is to say that your handicap is more important than someone else's 

If you don't know ask does it hurt you to politely inquire ? NO !  I don't judge someone on how they act or look . 
* This happened to me recently at a Cinemark Theater on a tuesday night *

Just because I have  makeup on and I am dressed in anything other than pajamas doesn't mean I am okay. It means I am just putting a brave face on and pushing the pain away to help me get through another day . Do you  know how long it took me to do anything? Do you know How I feel ?

 I shouldn't have to get a lecture about it from strangers .

 I know what I am doing, and yes I have a disability that you can't see. 

It is Called a Invisible Illness for a reason .  

The attendant at the window yelled at me and my husband about sitting in  the unoccupied Handi- cap area enough that my husband was so mad he gave her a education on illnesses and disabilities .

I just wanted to  cry and go home it shouldn't have to be this way and it made me mad and ruined the night. 

(all  because my husband wanted to get me out of the house , I am so sorry that  I can't make it up the stairs due to the pain and stiffness i feel . I can't walk that far and of all things it was The secret Life of Pets that we saw and the theater was dead . I shouldn't have to prove my Illness / Disability to anyone .

 I know what I am doing, and yes I have a disability that you can't see. 

It is Called a Invisible Illness for a reason .  

It's truly sad that these feelings are what i fight with on a  daily basis.  

This is where the depression can win and you have to keep fighting for your life ....

You have to tell yourself that you are worth so much, don't ever discredit the little things you do. They may seem small but they are huge . 

Good for you that you got out of bed ,

 Good for you that you are able to work

 I am proud of you even if no one else say's it.

 the littlest things we Lupies do everyday give us the fight we need to continue this journey with a head held high.  yes I have learned just how strong i am from this disease . You know I continue to raise myself up day after day ! I didn't think I was strong enough but I am.

I hope that this helps you out in anyway . 

Today I was reminded of a beautiful Quote that Ezra Taft Benson A prophet for The Church of Jesus Christ of Latter Day Saints said

*Be Cheerful in all that you do 

Live Joyfully, Live Happily, Live Enthusiastically knowing that God does not dwell in Gloom and Melancholy But in Light & Love 

Yes I believe that this is true and that this is all happening for a reason . Do i need to be happy about it ? No , i can be mad or angry but I will never know what this sacrifice is until i see him face to face and ask ....

 As always Thank you for taking the time to read if you have any questions you can ask or leave them in the comment section .

                      Stay Strong and Keep Fighting

                                      Love Ya , 

                                           Misty