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Lupus Thoughts and Ramblings




                                I need help! 
This word is not used that often with any mental illness or any diseases. Because of your pride You dont want to be a pity party or you feel like a burden so you keep those thoughts to yourself not even a Dr. could get you to open up . With Lupus I have heard a lot of things but this caught my eye. 
 When you let someone know you are struggling and you Need Help , how do they react?  Are they loving and try to help or they act like its nothing.

  How do you cope? How do you stay Sane? 
Your body is broken, your quality of life is seriously garbage and you are so tired of it all. What Then?
I can relate a bit on this , I know at times my family plays around .
But when is the point you say enough? You beg and plead for help in your mind. Do you dare say it out loud ? Or Fear of what may happen?
you need help finally comes out and you don't get the answer you were looking for or they just "sigh' or "huff"  and puff like you are ruining  their life.  How would it make you feel? Like a Burden? Amiright? 
* I have been losing my eyebrows and this is really bothering me. I don't know why , but it bugs me big time. When I draw them on the best I can (which can take hrs because I have to stop, breathe and start again. )
 I get so many discouraging comments, On how bad they are or they're too dark, etc. It drives me crazy to the core ....
It's not a big deal to them but it is to YOU.  Just supporting them in purchasing the right products to Make them feel better would be nice. 
I am tired of the pain I feel, the immobility, and the day to day hardships.
 I want to sleep at night. 
I just want it to end! 
 I want to be beautiful and I want to be a mom to my kids and be a wife again. 
To be able to work out and be fit and healthy,
 To be able to work, to buy the stuff I want like makeup, jewelry, clothes, shoes etc.
 Is that so wrong of me? 

I have tried the whole Gratitude thing where  I write what I'm thankful for every morning and night.
The hardest is when my family is asleep and its usually between 3-4am and I have my not so much wanted or needed nagging voice it tells me that I'm a burden to them, 
 yes they would be sad but they could grieve and move on. 
You are just going to be in a shell forever
You will always  feel pain
It just brings you down a dark hole This is what being sick will do for me.
I always end up pulling myself away from all of that and its usually being cradled in my husband's arms.

  But still, What the Hell is WRONG with me?  

 Please tell me that these thoughts are related to my Lupus and it's symptoms? Please tell me I am a sane person? That I haven't lost my mind or I'm making it all up?


New post- a few days later-

Today and yesterday have been the worse, I tried to go see a movie to forget about it, but nope, it let it's ugly head show.
 I am so tired! Have I said this already?
 I think the best for me now is to sleep and hope I feel a bit better when I wake up... 
Please Heavenly Father help me. I feel like I'm slipping away... Both Physically and Mentally. 

Sept 19th-
I started Physical Therapy in the pool, I've only been for my 1st session and I am shocked  how night and day it is.

First off, I am not a swimmer, I am scared to death of drowning and water.
Plus I had to buy a swimsuit. I was stuck with what was left and not happy about the one I got. But Oh Well.
When I met my PT coach she was super nice and I trusted her, she understood my fears, and doubts and she would save me from drowning. I was Okay

 I got into the 4ft heated pool and it blew my mind how my body felt. It was so warm . First off I felt weightless, my swollen legs felt great. I felt nothing, I think I was in shock and a bit scared.
 My pain felt more like a small cramps. I wasn't scared that I was in the water

I was able to squat, move my legs, do bicycle kicks etc. I even kinda floated with a pool noodle and didn't realize it. Going from immobility to be able to do what a normal person could do with no pain made me a bit emotional that I cried.. It's been a very long time since I felt this way.

My sessions are an Hour long and I loved how i felt. Now, when I got out that was a whole different story, the weight pain and leg pain came back and where as I was walking perfectly fine In the pool I couldn't even walk by myself, I was back to the immobility and back to the world of disability.  I almost wanted to get back in the pool and never leave.
I have another session next Weds. I go once a week.

 Well, my friends, I am off to Meds and Bed.
Thank you for taking the time to read .

            As Always Stay Strong And Keep Fighting,

                                   XoXo, Misty

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