I get asked A LOT what it is like to live with Lupus.
How does it feel? What does it mean when I can’t fly or I can’t walk an amusement park or a mall (why not?) – or why it hurts so much more in the morning or why some drugs seem to work and others don’t. Why some weeks seem great and you are near remission and then suddenly you are back in the hospital…you get the idea.
So I thought every so often I would do my best to walk you through one little special something* I am dealing with physically. Teach you, show you, do what I can to share my own unique experience in the hopes it might help someone else. Or, at the very least, help others know they are not the only ones out there suffering and dealing with this crap.
Today I thought I’d tackle the reason we couldn’t have Christmas in North Carolina as planned. It’s a well-known ‘thing’ that auto-immune diseases tend to flare up at the worst possible moments. No really. It’s some odd, scientific, auto-immune fact. As you can imagine, our Christmas party was a bit ruined. Cousins were let down and everyone had to just shrug and say things like ‘well, that’s just how it goes.’
So how DID it go THIS time around (because trust me, this is just one of a thousand scenarios)?
One of the many reasons I couldn’t (and still can not) get on a plane is because both of my legs are suffering from this ailment along with a host of a million other things Vasculitis brings.
So what happens? With me my feet and legs basically swell up so badly I get bruises, red stretch marks, and my skin actually breaks and I bleed. Yes, it’s THAT bad. Here, let me show you:
Keep in mind I took this photo this week, well after the really nasty part had subsided around Christmas Day.
My particular auto-immune issues cause inflammation ALL OVER my body. It’s been in my gut, on my brain, my spine, that whole reproductive area that is now gone…anywhere and everywhere. Kidneys, liver, and of course the biggest organ of all… my skin.
My doctor has never told me I ‘couldn’t’ go anywhere due to my disability because he firmly believes the emotional and mental lift from being able to occasionally see family or friends helps me more than any drug and outweighs the risk. That is until now.
He said if I were to get on a plane with these issues, he would be basically writing me a prescription for a blood clot.
Those are bad.
I was told to put my feet up, stay off my feet, and to basically ‘rest’ as best I could (I’m sorry but I really hate that…I mean ALL I DO IS REST DAMMIT) while making sure Santa and his elves had fun.
We’re now into January and my ankles and legs are better, but not entirely recovered. Ok so they look like tree stumps with bruises and red splotches. I’m such a sexy beast.
But hey, I can walk on them now…where as before it HURT to go up and down stairs, make myself a cup of tea, shower, you know…move. Yes, things are much better. But I would recommend you steer clear of Vasculitis if you can.
That being said, it just sort of comes along with the auto-immune menu of love…and now you know a bit more about my daily life.
*that special something could be ANYTHING related to auto-immune information. I am not a doctor, I do not claim to know a damn thing about any of this other than WHAT I AM EXPERIENCING – so please, do not take anything I say as health advice, or even slightly competent advice…talk to YOUR doctor, talk to a licensed medical professional…this is just ME and if there is one thing I have learned with my illness, it’s that I am not normal.