I’ not sure whether I should laugh or cry. I have, finally confirmed, lupus. On my Polish blog, I had some texts about lupus. Why it could be the cause of stroke, or why I suspected I had one. Also why we ruled it out.
Now I’m left with my English site and I have to be bit straightforward: I have a very mild lupus. Bad news in bad time, but usually no one asks you when you want to receive such news.
WHY SHOULD I BE HAPPY WITH THIS DIAGNOSIS?
- it’s a skin type. I don’t have to worry about kidneys, and eventually most of the organs, shutting down. Just about skin. Yay!
- the treatment doesn’t involve steroids, but antimalarial meds. At least at the moment.
- it’s been in me for years. A real pain in the ass. Now I have a chance to improve some things in my health.
- I’ve not been that sure whether the kind of lupus causes strokes. But if so, treatment must help to prevent next strokes. Yay!
- Because I’m having like very very very minor symptoms. Lupus is there, but it doesn’t bring any threat I wouldn’t know about.
- I don’t have to search for the causes of allergy for the sun, rashes, hair falling out, swollen lips… I have it in one diagnosis!
WHY I SHOULDN’T BE HAPPY ABOUT IT?
- the collection of chronic illnesses grows.
- listing my diseases and maladies will take even more time.
- it’s pain in the ass.
- I feel like the sickest person on earth
- I can’t leave rheumatologist after two visits. She stays with me.
- I have to learn another complicated illness. Come on. I’m into brain, not skin. Actually, it’s been few days and I haven’t started reading on lupus. I have a whole life for that.
- there is not much hope that one day I will go to the sun not covering my face.
REACTIONS TO THE NEWS WERE VERY DIFFERENT FROM EACH OTHER
- at least it’s not cancer (come on…)
- you have to find yourself a new hobby
- I thought it’s been excluded already? What’s going on?
- I don’t know the second person who would confront so many obstacles with such strength and class. (…) You don’t have any new disease in your packet really. You just found out about it.
- I’m here if you want to talk.
- Oh God, another one…
- at least you know what’s caused your strokes
- Dad: silence. Grandma: silence.
- Me: laughter. but just after the cascade of the thoughts.
and it’s just tough and sad I guess. It’s not like I’m having only that lupus thing on my mind, but it doesn’t help to make myself better.
I just have to fight and I learn about myself as much as I want to. I had some texts about good stuff coming, but suddenly they don’t feel as important as like a week ago. fun thing is that I have to avoid.
fun thing is that I have to avoid the sun, especially this very sharp, like opposite of British. And I’m going for a week for Cyprus. Good for me and lupus;)