Hi all my friends, sorry for another 3 weeks since my last post.  The summer has been so brutal on me; I flare pretty constantly and have a good day now and then but not nearly enough of them.  I am counting the  weeks until fall and winter where it makes the Florida summer almost worth it.  I am sure in December I might say it is worth it but in the dredge of misery that is my summer, right now it feels like a lie.  I am depressed and feeling like a bad mother who hibernates with her kids while others are going to the beach, pool, playgrounds, etc. This is my normal MO each summer so I know I will survive it and it will feel so good to get out with them from October until whenever the heat becomes prohibitive again - usually May,.  So I have a really bad 6 months for a mild 6 months where the weather is perfect  me.  When it gets cold, I struggle much more with Raynauds and stiff joints getting out of bed in the morning but it is much better than the heat/sun problems.  But I know if I was up north where I was raised, I would have a much harder time with the cold since even Florida's mild winters affect me.

So back to the topic of this post!  I have always had a malar rash so to a certain extent I have always displayed my illness more than some other lupies can.  But I have been frustrated along with everyone else that has lupus that we don't necessarily look sick so therefore we can't BE sick in some people's minds. And in my experience almost 5 years into my diagnosis,. I am sick and in pain more often than not.  And it is a fight, every day I wake up in pain and have to fight to get out of bed, to take care of the kids, keep  the house somewhat clean and count the hours until I can take a nap and wonder how I am ever going to get through the day.  I have had rashes all over my arms, stomach and legs all summer but most of  the time people either can't see it, don't notice them or are too polite to talk about them.  What has changed is my joints in my feet and hands when I wake up and sporadic throughout the day are red in the joint areas where I have intense pain.  So now instead of just talking about how much pain I am in, my husband can look at my hands and feet and know.  So although I still would LOVE for him to walk in my shoes and feel my pain for even an hour (he would never last a day, lol), I think this visual is helping since my husband grimaces each morning as he looks at my red joints.  And since the redness does not make my hands or feet 2 hurt any worse, I welcome the change.  It is strangely comforting when I am in so much pain to see the angry red rash on my joints.  It motivates me to keep fghting, I will never give up!

xoxo,

Lupus Celebrity