I’m sure that got your attention, didn’t it?
Well, no, I’m not coming out of the closet in that way. I have actually decided to come out of the closet about the fact that I have a chronic disease called Lupus (SLE). This isn’t such a shocker to those that are close to me. I was diagnosed over 10 years ago when I started to get really bad Raynaud’s Phenomenon – a condition where extremities lose blood in cold. But in the past year, I have had my ass handed to me on a platter by this stupid disease. I admit it. I struggle. A lot.
I am finally willing to admit it publicly in an effort to maybe offer some solace for others that are struggling or to educate people about some of the issues and complications that life with lupus causes.
What is Lupus?
Lupus is a chronic aut0-immune disease. In the case of lupus this means that the body turns on itself and instead of anti-bodies that only attack invading tissues, the body ends up attacking good tissue as well. To put it in layman’s terms my body is in a constant battle with itself. You can imagine the strain and stress that one’s body is in trying to fight this fruitless battle on a day to day basis. I guess you can think of it to be something like fighting a neverending cold. It is exhausting – even on good days.
Thankfully in my diagnosis it is not life threatening. There are a lot of people who have organ involvement and I have been spared this. But it is still probably the most challenging thing that I have ever had to face and I am still learning to live with the great mystery of lupus.
So i’ve decided to come clean. I thought it might be theraputic to share some of my stories and perhaps helpful to other people who feel frustrated and alone in this constant battle.
Coming up in my posts will be:
- Symptoms and coping
- The joys of hairloss
- Raynaud’s tips and tricks
- Dealing with fatigue
- “But, you don’t look sick”
- No sympathy, just understanding
- Life balancing
- Allergic to sun?!?
- and more