Tell me how you really feel

I hate invisible illnesses.
I hate them even more when they are no longer invisible.
I hate not being allowed to bask in the sun.
I hate lupus.


There are a few things you need when you have a disease:

1. Humor:

You need humor.

You have to be able to laugh at your own expense. For example- as New York seeks to legalize marijuana for medicinal purposes, I laugh at how many people are going to be so jealous that I can be a card carrying legal member of the marijuana club. Who would have thunk that so many would be jealous of me having lupus?!

2. Positivity:

Positivity is awesome and absolutely necessary when you live with any kind of illness- invisible or otherwise. When I started my blog many people would say- you’re so positive, Talia!

Me? Positive?

Sure, in many ways I attempt to exude positivity- it’s my survival mode. My defense mechanism. It’s how I get through each day because when you have lupus you need to be positive. Otherwise, what else do you have? Oh yes, you have lupus.

3. You must be a realist

Sometimes the glass is not half full- sometimes there’s just liquid in it. This is my other survival mode- positivity doesn’t always work. Sometimes, positivity is the nemesis. I need to get into a worst case scenario frame of mind… And as sick as that sounds, it’s how I can function. If I know that default mode is sick, when I’m healthy I can feel as though I’m on top of the world.

So where am I at today?

Today I hate lupus. I hate it, I hate it, I hate it. Lupus, you suck. Lupus, suck it.

I don’t know what’s going on, but my body has been breaking out in hives for the past week.

Exhibit a:

Ay dios mio! Back, legs, hands, face… They are everywhere.

I called my lupus doctor (aka my rheumatologist) and the verdict is that it could be the sun. It could be my lupus. It could be allergies. It could be none of the above. So take Claritin and give him a call in a week if it doesn’t clear up. And there’s something so frustrating about having a disease that leaves even the doctors puzzled.

On days like today I just need to remember- positivity. humor. realism. repeat. And I guess I just have to wait it out. And take some advice from bears if/when necessary:

And that folks covers your lupus facts of the day- sometimes it makes you itch and no one will be able to tell you why.

Now, tell me a joke or a story to make me smile. Go!


19 thoughts on “Tell me how you really feel

  1. Interesting, I don’t have Lupus, but I have another auto immune disease, Graves Disease. The other week, I thought I was ravaged by mosquitoes, I had about 30 bites all over. Maybe they were actually hives? It is winter here and I haven’t seen or heard any mosquitoes. We thought maybe we had fleas but they didn’t look like flea bites at all.

    I know what you mean about positivity. I used to be a really positive person but lately I have found myself hating a lot of things. Someone tries to give me advice and suddenly it pisses me off. I get angry at nothing. I try to remind myself, that isn’t me.

    • Good chance they’re hives 😦 I thought it was bug bites too but they would disappear and then come back in the same exact spot… Happened like this for over a week!

      I started this blog, running, yoga, at right about my breaking point- that point when my happiness started to wane. Every once in a while we need a kick in the ass to remember why life is so beautiful and how our challenges will not defeat us! So, the next time you are feeling angry at nothing write an “eff you letter” to graves… That bastard!

  2. Ummm.. I’ll try. Think about how much you will save on sunscreen? No?

    OK, at least it started in June. Think how much it would suck to have a Lupus breakout during Lupus awareness month.

    Much luv kiddo.

    • Not so much for the sunscreen…. I should invest in sunscreen… It will pay me back big time with how much I use….

      As for flares in June, as a teacher I’m glad to not have any issues in June! Next week is the start of my break! There’s no time for my body to go haywire on me!!!! And flares during lupus awareness month, maybe it will make people more aware? Hmmm…I had a flare last May… But that’s what led me to this blog! (Silver lining in it all?)

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