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Saturday, August 16, 2014

My nemesis...The Lupus Rash!

Ya know, I was hesitant to write this. I think it was because my Lupus rash (Malar Rash or Butterfly Rash) is embarrassing, ugly, kills what ever little bit of self esteem I have left. But then again, I thought, I can't help it. It is what it is and I am sure that there are others who are dealing with this and feeling the same way. I not only develop this crappy rash, I also experience:

  1. Increased fatigue but a different feeling of fatigue. If that even makes sense??
  2. Joint pain
  3. Feeling like I have a fever but temp is normal. Get chills too, goosebumps.
  4. I feel like my arms are on fire!
  5. Just want to go to bed!
So, with that...here is my shame..
 This was last summer. My lovely back and neck. Had sunscreen on my face and arms. Hat on. Cooling towel on. OH CRAP!  Forgot to sunscreen back of my neck! This rash really hurt. It hurt to have a shirt on at times. Just a raw, grating, on fire, pissed off, angry skin! Again, steroids did a great job on this. I will never forget the sunscreen on the back of my neck again!
My lovely neck! The pic on the left is NOT ringworm and NOT a hickey...trust me LOL. I was asked that quite a bit. Even my Rheumy asked if it was a hickey!  I also got plenty of dirty looks and stares from strangers lol "Yeah, it's a hickey...So what? Jealous?" Hee hee! This was a few months ago. Something weird about the "hickey" is, the center of the lesion was numb. Lupus has to keep it fresh I guess. lol A wonderful shot of steroids cleared it up. Well, not completely but looked and felt better. Now, the pic on the right is going on right now. It's angry! I have been putting off calling the doc for steroids but I am thinking it is time!
Yes, you see Lupus rash on the list of symptoms but it's never truly explained. I just thought this was an important blog because I think people truly do not understand how it feels, not just physically but mentally.
Hugs!!
Jenn

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2 comments:

  1. Glad I found your blog. I have an abundance of issues that have been going on stomach pains very often, lung peoblems, bowel problems, weight gain, weird rashes on neck, ears, cheeks, chest, hair loss, fatigue ect. And the list goes on. :( How do you find out or how do you ask to be evaluated for lupus?

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    1. I am so very sorry for taking so long to read your comment!! Depending on your insurance, you may have to first start with your primary doctor and ask for a referral to a Rheumatologist. This type of doc specializes in autoimmune type illnesses such as Lupus. Though I will tell you that you have to be careful on the approach with the doctors. They like to think it is their idea to send you to a specialist. Instead of saying "I found on the internet that I might have Lupus, can I get a referral to a Rheumatologist?". Try saying "Ya know, I get these weird rashes, my fatigue is awful and I have pain. Do you think I should see a Rheumatologist?". You will get better results this way! Good luck and pls contact me anytime, preferably through Facebook. www.facebook.com/youarenotcrazy. Text me anytime!!
      Jenn

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