The thought has been on my mind for a while now, and I feel like I finally want to share this information with you, make it part of this blog. There isn't, in fact, a reason to keep it a secret, really.
I have Lupus.
I've had it for about 14 years now. I was diagnosed in 1998, it really kicked my ass between 2000 and 2003, got better the next few years, and here I am, fighting it again since 2010.
Since I've had my baby, the Lupus has gotten a bit worse, and while I've been trying to deny to myself that it has been flaring again, today, also by writing it down here, I am acknowledging that it is a problem I need to deal with, and not avoiding it in hopes that it will go away on its own. It doesn't go away on its own. It doesn't go away, period. But if you're lucky, and take care of it, it will let you lead an almost normal life.
My medication of choice in keeping my Lupus in check has been Prednisone. Many doctors will gasp at this, especially when they find out I've been on it for more than 10 years. But after many trials and errors, I've come to accept the fact that while it's not the best medication for me, it's the one that's kept me going when no other med would work.
The problem with Prednisone is that it messes with your body big time. It makes you fat. Bloated fat. No matter how much you try to keep your weight in check, it's a losing battle. Sure, you can starve yourself, but you will still look somewhat bloated, and you will want to kill everyone around you, because your stomach will be screaming for food: it makes you so hungry!
Today I'm needing 15 mgs. And, sure enough, within 3 months I've gained 10 lbs. :(
So I've had to deal with a few ups and downs already: the hair will start to fall, I will try to stop it from happening by using all kinds of treatments, I will fail because there is nothing I can do about it, I will cry and then cut my hair short, it will take a few years to grow back, and then, if I'm lucky, I get to have some few nice hair years, until it happens all over again.
Not to mention the fact that now my hair grows so slowly, that sometimes it feels like it's actually getting shorter instead of longer. Yes, that's how bad it is.
But I can't complain. If hair and weight are my only problems with Lupus, then I'm blessed. I mean I do have more problems than that, otherwise I wouldn't have to take the Prednisone, but I guess I'm talking from a vanity point of view. I would love to be my old 105 lbs girl!
Today I'm more stable than I was when I was first diagnosed, but I feel like I'm slipping through the cracks, and that something needs to change.
I'm not sure what, yet. I'm trying to find out. Maybe I'll need a new medication, or maybe I just need to take it a little bit easier in general.
In any case, I will still try to diet, exercise and pamper myself as much as possible, because having Lupus doesn't have to mean giving up on trying to look and feel my best, even though it's exhausting dealing with the ups and downs, the weight shifts, being fat, skinny, fat, skinny, and with clothes that fit, don't fit, then fit again (that's why I love handbags! They always fit!), with hair that falls, grows back only to fall again later... oh well, no time to be bored, I guess. ;)