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Lupus Ramblings and thoughts







My kids have been counting the days till break this is what I picture them like...
It's June already! school's out, it's beautiful sunny HOTTT days and all I can do is sleep.
I have been so completely exhausted this last week. TBH. I have slept days straight, except to wake up long enough to eat my dinner.
I would say "STRUGGLE" is accurate because  I kept falling asleep in my food. *head bobbing back and forth.

I was able to sit at the pool one night and watch my kids swim . Mayson 13- Camden 15- Jayedyn 17- and my adopted son (LoL) Bryan- Camden's friend or the whole family's. who am I kidding.
 -As far as Lupus goes -
my biggest issue right now is struggling with my body. (trying to regulate a warm temp.)
 I get so cold that I shiver so bad that even warm blankets won't help.
 At these times, I think such terrible thoughts.
-One reason is I  feel the pain so intensely and doubled.
It's worse than giving birth, having a  C-section or gallbladder problems. I can't sit, stand all I can do is lay down and pray it ends while bawling my eyes out.
I feel like something is slicing my body over and over, to be honest...
 I just want to die at these moments it seems to end after a few long excruciating minutes and the pain leaves.  I feel nothing, not cold, not warmth, no pain, Just nothing, then a warmth comes over my body and it makes my body feel a bit better.
WTF..... I feel like I may have Died and then come back to life.
 As soon as this ends the pain comes back & everything hurts again, That's how  I know I am alive ...  It's Crazy, right?


-New Medications that I am on right now...

 Lyrica 150 MG - This takes maybe 20% of my pain away. I can stand and walk for a bit longer. I can walk downstairs and to the pool with minimal breaks, 4 out the 7 times is progress amiright? This also means I don't have to take a break when walking from my car into a store.

 I am a bit more active and can do minimal house chores for at least an hour before I need to rest.

 Lonnie thinks that if I had a stronger pain medicine I would be okay. (Maybe)

The Downside is the medications I take seem to be making me gain weight, but I can't do anything about that because I need them.


I am also at a Stage 2 Hypertension 
My blood pressure recently was  172/110
This means that my heart is working too hard.
More than likely I will probably die from a Heart Attack. 

I am also dealing with these issues.  Others I have talked to also say that its okay, but is it really?

I know that my husband loves me but sometimes I just feel like wasted space, annoying and just ugly in every way.
I know that in a sensual way If you know what I mean. I know my confidence is shot to hell because of the weight gain but my face and boobs are still looking pretty good (the boobs have nursed 5 kids)

I also feel like all I do is annoy everyone or I take playing around to far and then everyone else is angry. I see them all joking and having fun and get super jealous. I try to join in and it's like I am an outsider. They whisper and have inside jokes and its like I'm not even there I usually leave and just go back to my room with hurt feelings.

Has anyone else felt like this? Or do I need to sign myself into the looney bin? Who knows? It could just be me wishing I wasn't sick or having a pity party for myself?

My plans -
I am going to try my hardest to lose weight and move more starting in July. This is gonna be super hard because of my immobility. But I am gonna try dammit.
Eat Better, Take my medications on time, Get up and move even if it's just walking down the stairs. 
Be kind an celebrate each day I'm alive ...



Buy more Mantra Bands to remind me to Live the Best life I can. (I want a whole arm full) 
So far it's been Infinite Love- Fearless- From the hubby-Dream Believe Achieve- from the kids. 
                  I need to purchase some more


                      Well, that's all for my Rambling 
                 Thank you for taking the time to read. 

Let me know how you are feeling? Or if there's something you do that helps you make it through the day?

            As always Stay Strong And Keep Fighting!
                                    XOXO, Misty


*I am happy to announce that I am a Brand Ambassador for MantraBands
 I have a code for a 10%  discount, all you do is add Mistykj@yahoo.com 

These are my bracelets you see me always wearing they have inspirational sayings on them to help me make it through each day.....

You can find out about them here-MantraBand



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