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Lupus Thoughts and Ramblings

It's 4 am in the morning  and about 22 degrees outside.  I am awake because i am in so much darn pain i can't sleep. 
The pain specialist gave me a prescription for a 
sleep aide/Pain management,  all it does is keep me wide awake it doesn't stop any pain but increases it more . 

When someone says anything to me about my illness. I just imagine how it would feel to just feel something other than pain , hate, ugly,fat,lazy,useless, alive .
I feel like it is getting so much worse . I can't stand without almost falling, I can't walk for longer than 20 mins without feeling like i am going to collapse , any physical activity puts me through the ringer . I can't sleep at night so i take naps in the morning because i cant sleep at night . 

I am not hungry as much now because i am afraid of how my stomach will react to it . I would rather not eat anything then feel the nausea and pain .
I know it is probably hard for someone who has know idea, to understand what i am going through . How i look normal on the outside (except for the occasional rash i may get) i can cover that up easy and still look like nothing is wrong. 

But if you only knew what I am faced with daily you would fall to your knees crying .
 I am trying this year to be so positive, to count my blessings , be thankful that i am alive , just try to find the good parts of this everyday. To not loose faith that it will all work out . 

Do you know how hard it is to have faith when it feels like you are being sliced and diced on the inside ? I do, 
I didn't ask for this, I don't want this , and right now I just want to sleep and stay that way .
Fear is what use to keep me hanging on, Now I just don't care. I can't believe that I feel this way.  
I am doing the best I can to shut out my kids and husband and act like i am okay . My husband can see it in my face and my kids know now when I need to rest . 
Year 3 of my diagnoses, Year 41 of living with this crap. 

I am outside of my home 2x's per week sometimes per month
 One is always Date Night -We usually go and watch a movie or eat out, this i can handle for a whopping 2 hrs at the most .
the other is for my sanity or Dr's appts.
I don't like to go out anywhere now because i start to loathe the people I see who are shopping, smiling and walking normal , Do you know how hard it is  to smile at people for me now a days?

I am seeing a pain management Dr. Now and soon a Physical Therapist and wait for it ! a Psychologist for coping methods. 

Yes, I do want to die most days, but would never do it. 
I love my family too much . It's hard not to think about when you are retching , Exhausted, extremely fatigued and in more pain than natural child birth. But I am "TRYING" key word here TRY .

I am now experiencing the same pain in my left leg which if you are keeping up that is both legs for me Neuropathy=Immobility 

I know i need to walk around more   and  i do push myself at times. it's extremely hard when you are gonna collapse from your legs shaking so bad.
 ( I am sure this is MS setting in .) I can never do things gradually it's a all or nothing for my body .

The other thing i am noticing is my skin. It looks Terrible, lack of sleep, pain, can all take a toll on your body. Esp at the same time.  
I use my Dermalogica skin care religiously  and sunscreen everywhere. 
My rash comes and goes, every time it leaves me a spot or two as a reminder (like I need One ) 
Its probably also the weather playing its part, If i had to describe it i would say  it looks Leathery, a double chin , and more discoloration but is soft to the touch. more  lines and wrinkles loss of elasticity losing it's firmness overall no matter how i try foundation doesn't sit correctly on my skin .
I look older without any makeup on .
 I know that it is all because of this disease  but my self esteem has taken a hit .

I am trying so hard to not buy makeup I don't need , but with my skin changing everyday it's hard to stay with one product.
I never know how it will be from day to day and I know that it frustrates Lonnie , Only because he can see right through me and he knows the frustration I feel .
 The one thing i know i can always use is Lipstick !
 So that is mostly what I purchase . LOL  plus it makes me Happy I love the shades of so many but my Favorites so far are  the Wet & Wild line of liquid lips 
-Megalast Liquid Catsuit matte lipstick
 (yep, you see right I own the whole collection..) 

This stuff is amazing and last through anything I mean it stay's put (TMI ahead) - Even through throwing up) I mean if a lipstick can last through that it is a win in my book. I am also loving the Lip liners I have all but One . I feel like these are my flowers , beautiful shades  the difference is they won't die .  If you haven't picked them up you should Try them all The price tag won't break your bank .

I think I have rambled on for too long it's now 7 am  time to get the kids off to school, maybe if i am lucky I can sleep for a bit today  Who am I kidding I will shut down in a bit just don't know when.

Thanks for taking time out to read if you have similar feelings like me please know you are not alone. I am here for you. 
                       As always Keep Fighting and Stay Strong !
                                                      Misty 



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