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Why cant people understand

Updated on January 25, 2016

Entering My World

This week has been tough for me to sleep, fellow warriors of this hell, I know you understand. For those of you lucky heathly people, who are curious, first off, thank you! Thank you so much for trying to learn what we go through! To help you understand, here is a list of my personal challenges with sleep this week

  • My knees feel like they are a rocks sitting on balloons. I'm just waiting for something to pop or explode

  • The "pain medicine" I'm prescribed makes me dizzy. So, it feels like I'm having a hangover minus the fun of earning it.

  • My bones feel like they are moving. My wrists, my spine, and my ankles feel like they are trying to move away. They think they've gotten too good for their home.

  • Also, my husband snores. I'm gonna blame that on you too lupus! So there! :p

Finally, falling asleep last night (or I should say this morning) around 3 am, my husband's cat decides I have had enough sleep around 7:30 am. If you are battling with this, you know fatigue is NO JOKE and hibernation isn't just for animals!

My brain fog game was on strong today. I probably won't even remember my password for this blog tomorrow. Let me add, I take adderall and yet I still am walking around with the memory of an 98 year old ...or that one pot head dude you knew in highschool.

Anyways, I wanted to go to the gym tonight. I gave my husband a membership for Christmas and we love to work out together . Only issue is, there's a civil war going on in my body and I'm pretty sure no one is going to win. We drove to the gym and on the way there I started to feel so tired that I think I could see Jesus, ya'll. The gym was also packed out. No where to park. A bunch of pretty, fit, healthy, girls in the window working out... ugh. Hubby decided to go home and we would just go tomorrow AM. I miss being able to run 5 miles a day just to stay up all night to drink like a fish. Now, I nearly fall asleep on the way to the gym. I'm 23! Not 223!

When my husband and I got home I started to cook us dinner. I put one of those frozen microwavable veggie bags in the microwave, when it was done, I tried to open the bag. ... I couldn't open the bag ... a plastic bag with a pre-cut line. .. I am too weak to open it. I got scissors and opened up the stupid bag before my husband saw me struggling like I was trying to defeat Thor. We sat down to eat dinner, I got my fork and tried to start eating. .. my fork was hurting my hand. It felt like it was cutting my hand where i was trying to hold it. This, people, is why I believe in cookies and donuts. No fork required.

The purpose of this blog, besides me to whine and complain, is to educate people on what we face with lupus. Someone called me tonight and flat out laughed at me, when I said I've been having flares and haven't felt like doing much. I struggle to find info online about lupus, so it's understandable that the healthy people don't understand what we face at all. Also, yes we look healthy. Not all of us get a rash, and for a lot of us each flare is like a box of chocolates. .. we never know what we are gonna get. (They are always different)

Please be respectful and acknowledge lupus is a civil war we are facing, in our own bodies.


Please, leave your comments and stories below!


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    • MRSlupus profile imageAUTHOR


      2 years ago

      Michelle, tell them to test your ANA! I believe i started having symptoms when i was 17, i am now 23... they have just now listened to me- they also acted like i was crazy when i told them to test my ANA! In my area it takes about a year to get in with a rheumatologist , lupus can affect your organs the longer you go undiagnosed also symptoms can keep getting worse. Insist that they listen to you. Please keep me updated on you and how everything goes.

    • profile image


      2 years ago

      Add Your Commen lupus omg,I'm pretty sure that's what's going on with me,they tell me so many different things,I'm going crazy,my regular doctors starting to think I'm crazy,they say I have all the different things,and they don't listen to me,I know my ,so to me eyes know my body more than me


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